In Her Words: Christi Nelson
Introducing Christi Nelson, an extraordinary woman whose journey with metastatic breast cancer (MBC) defies the odds and exemplifies the power of resilience and beauty in the present moment. Christi's remarkable story begins with a courageous battle against triple-positive Stage 2b breast cancer, followed by an unexpected diagnosis of Stage 4 MBC, profoundly altering her life, relationships and perspective on wellness.
As we approach Metastatic Awareness Day on October 13th, we're honored to share Christi's inspiring journey. Her story serves as a reminder that, in the face of metastatic cancer, every day is a precious gift, and every moment is an opportunity to find strength, purpose and beauty in the world around us. To learn more about Christi's experience and gain insights on living with metastatic cancer, read on. Also, be sure to keep an eye out for Christi's face in Everviolet's editorial – she's one of our newest, remarkable models!
Name: Christi Nelson
Age: 50
Location: Castro Valley, CA
Current Health Status: Stage 4 MBC
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Tell us a little but about yourself.
I'm a 4-time breast cancer survivor and medically retired geoscience girl and educator, turned breast cancer recovery program creator and mentor. I’m a hiking addict and lover of coffee, chocolate, nature, music, maps and my family (and my kitty, Miss Hershey Kiss).
When were you diagnosed with breast cancer?
I was diagnosed with triple-positive Stage 2b, Grade 3 DCIS in September of 2013 at age 40 during my annual physical. My doctor found a lump and I was immediately sent downstairs for my first mammogram, followed by an ultrasound and the bad news. In 2015, 6 months after chemo, a single mastectomy, radiation, and reconstruction, I was then diagnosed with Stage 4 metastatic breast cancer –meaning that the cancer spread beyond the breast and into other parts of my body.
How did you feel when you were diagnosed?
When I was initially diagnosed, I was in shock. They can’t really tell you you have cancer until you get biopsied. But the ultrasound doc called me in and showed me the slides and the techs were handing me American Cancer Society brochures. After the pathology came back malignant, I was shocked again. I thought I was the picture of health. I exercised, ate clean and the only daily med I took was a multivitamin.
Everything happened so fast and it was information overload. I was like a deer in the headlights.
It was the same response after my initial Stage 4 diagnosis. I’d just finished treatment! I was seeing a therapist, managing my stress, hiking and working with an oncology nutritionist. My doctors were like, “How can this be? You did everything right?!”
How did your friends and family take the news?
It was a mixed bag. Some were devastated and cried, some went turbo and took care of logistics like setting up a care site, and arranging grocery drops and visits. Many family members stepped up and were there as often as humanly possible to care for my kiddos, Mike or me. A few family members and friends basically ghosted me, while little-known acquaintances came forward and offered support.
With the Stage 4 diagnosis, it was similar, except that as time passed people thought I was fine because I didn’t look like I had cancer. They were like, “So are you done with treatment now?” and if I said no, they’d ask, “When do you get a break?”.
It’s surprising how many don’t understand that with Stage 4 breast cancer, there is no cure yet.
They don’t understand that there are 2 basic goals of Stage 4 treatment. The first is to aim for No Evidence of Active Disease (NEAD) status where no active cancer shows up on a scan. The second is to keep the cancer from growing and spreading. Both goals require that the patient stay on treatment.
With Stage 4 metastatic breast cancer, treatment won’t end until it fails or until a cure is found.
What kind of treatment did you seek?
For my first diagnosis, my oncologist considered the initial size and placement of the tumor from my scan results, my age, the stage and grade (aggressiveness) of the tumor, and the genetic test results.
Because I was so young, and the pathology was ER+, PR+, and HER2+ and the cancer was already in my lymph nodes, it was considered very aggressive. It was decided to do chemotherapy first (TCH) to shrink the tumor, followed by a single radical mastectomy – during which an expander would be placed. During surgery, they removed 8 lymph nodes and found cancer in the first 3. Because of this I also had to do 33 rounds of radiation (surprise!).
For my initial stage 4 diagnosis, the tumor was inoperable and it was in a place that had already been radiated. Chemotherapy was the only option. A new chemotherapy medicine called Perjeta had just been put on the market – and it worked.
I’m living testimony to the fact that funding breast cancer research for Stage 4 patients is worth every penny. Without it, I wouldn’t be here right now.
I’ve had 2 recurrences since then and each one has been treated differently. I was able to get off infusions completely after one of them for 5 years before it was re-activated in 2022. At this point, I’m an expert in breast cancer recovery!
Have you been able to work while you're going through treatment?
Initially, I took an intermittent leave of absence and worked about 10 hours a week remotely. When it recurred as Stage 4 in 2015, I took a full leave of absence and then eventually medically retired from work. I made it my full-time job to heal.
How have you found the best care?
Valley Medical Oncology Consultants in Castro Valley, CA, and Stanford Women’s Cancer Center in Palo Alto, CA. In fact, Valley Medical Oncology is now a Stanford satellite, so Stanford all the way!
Have you received additional support or sought alternative therapies?
Absolutely. I have an oncology physical therapist, a certified lymphedema therapist, a cancer exercise trainer, an integrative oncology nutritionist, a psycho-therapist, a grief counselor, and a yoga and dharma teacher.
I enjoy somatic therapy, nature-based therapy and different variations of Buddhist teachings. I love mindfulness meditation, loving-kindness meditation and kriya hatha yoga. I’m also very active in a local breast cancer support community called Bay Area Young Survivors and Mets In The City (BAYS-MITC).
Who have been your biggest supporters and make up your cancer tribe?
Definitely BAYS-MITC and everyone I just listed, but I have a core group of co-survivors that includes my husband, my boys, my in-laws, my sister and a small handful of best friends. Three other groups that have helped me tremendously are DharmaBridge with Kelly Blaser, MFT, The Living Dying Project, and Commonweal.
What have been some of the most challenging aspects of the experience for you?
The first thing that comes to mind is how to NOT live my life in fear every day. Every scan and every appointment can trigger a memory of trauma and remind you of what you went through – and that it could happen again.
Breast cancer creates so much pain and trauma in your mind and body that you want to do everything in your power to prevent it from coming back. That creates a ton of anxiety and worry around doing everything “right” all the time – or else.
What is one thing you wish you knew before you were diagnosed?
I wish I had known that my value doesn’t rely on my job title, my achievements, my looks or my performance. Even without all the external validation, I’m already perfect. I’m already enough.
On a more practical level, I wish I knew that my doctor’s job was just to get the cancer out. Once it’s out, they just let you go. They say, “Go live your life and I’ll see you in 3 months.” They don’t tell you that it takes at least a year to recover from treatment and there’s little instruction on how to do it.
Is there a particular mantra or inspiration that helps you?
I had this sticky note posted on my monitor for years that read, “I expand in abundance, success, and love every day, as I inspire those around me to do the same” – Gay Hendricks, The Big Leap
If you could offer a woman, who has been newly diagnosed, some words of wisdom for her journey, what would you tell her?
When you’re going through treatment, eat what you can and do what you can, but go easy on yourself and focus on just getting through it. When it's over, you can focus more on wellness.
When the nurses and doctors ask how you’re doing, they’re actually asking about what symptoms you’ve had since the last appointment and any questions you have. Be specific in your answer.
Bring an advocate with you to write down information and questions, and to reiterate your needs.
What are you most proud of in your cancer journey?
How I’ve managed to thrive for almost 9 years (5 of those without infusions!) when only 28% of women survive 5 years after a Stage 4 breast cancer diagnosis (source).
How has breast cancer affected your outlook on life and illness?
My outlook on life is just 2 words, “no regrets.” Cancer has allowed me to have difficult conversations, mend relationships, and end relationships with people I love so I can live the rest of my life feeling lighter and free.
I now make a point to find the beauty in the world all around me and to make life a reason to discover new things, places and people.
Cancer has made me aware that health *is* wealth. Without your health, you’re not able to fully do or enjoy all the things in life like you can when you have it.
I’ve also realized that most people are experiencing some kind of silent hardship. The amount of empathy and compassion I have for others has grown considerably because of my cancer experience.
Throughout this journey, how have you changed?
How haven’t I? Physically my body looks different – curvier, but I’m stronger in different ways. My hair color changed and my skin is crepey.
Mentally, my cognitive abilities have suffered and I use coping skills every day. Social-emotionally, I’ve grown tremendously. I’m able to feel and work through my emotions, be with others’ emotions, and talk about emotions. I can listen without judgment. The relationships that I have with the people I love are stronger than before.
My spiritual practice has grown, too. I used to worry about the future so much, but now I’m able to live in the present moment and trust in the process of things.
I have a stronger sense of self than before, but it’s taken a lot of work. I can now find beauty and peace in the mundane instead of boredom, and I look for awe and wonder wherever I can.
