I was invited to speak at the 10th Annual Providence/Swedish Cancer Survivor Celebration. I've never spoken in front of an audience, unless you count yelling "Last call!" to a crowded bar. I almost said no. I'm glad I didn't.
I met some amazing people, was inspired, and it felt good to share my story. As a participant in the Patient Panel portion of the event, I shared the stage with an older gentlemen, and while we came from different generations, and experienced the landscape of hell that is cancer diagnosis in different ways, it was awesome to witness that we we came to the same conclusion: Life is to be celebrated with community and connection, and hardships can be healed with the right support. Here's my speech:
I spent the first 37 years of my life knowing nothing about my personal risk of developing cancer. I grew up with my single mom, and cancer wasn’t a thing in our family. Heart disease and diabetes, and a little bit of gambling addiction are what run on her side. My whole life I had been estranged from my deceased father and his side of the family, so I had never given my paternal health history much thought.
Until a small window of information broke through my family tree. Special thanks to my mother-in-law, the genealogist of the family, we found out that my paternal grandmother had passed away at age 45 due to ovarian cancer that had metastasized to her lungs. I remember thinking, How tragic! And also, Cancer can sometimes run in families, right?
Connecting with a long-lost relative on my dad’s side confirmed that cancer can indeed run in families. And in my family’s case it was the BRCA1 gene mutation that contributed to pancreatic cancer in my father, prostate cancers in his brothers, and breast cancer in my cousin. And of course, my grandmother, Charlotte, who’s death certificate was my pass to knowledge.
As hard as it was to learn these things, and that I may also be at risk of carrying the BRCA1 gene mutation, it truly felt like my ancestors were behind me, supporting me to find my way to this knowledge.
Just a few months later, in May of 2019, I was in the Genetic Support Foundation office, going through genetic counseling and subsequent testing, which confirmed I was positive for the gene mutation. The diagnosis was all at once a big surprise for me, and given my newly-discovered paternal family history, not so much of a surprise. It was a 50% chance after all.
I learned my lifetime risk of developing breast cancer was in the 80 percent range, and ovarian cancer, 60 percent. Katie and her team shared as much as they could--and as much as I asked for--to help navigate the new terminology and making sure I understood the risks, and benefits of each and every decision.
I ended up choosing surgical procedures to help reduce my risk, including surgically removing my ovaries, followed by a mastectomy and breast reconstruction a year later. These choices were as empowering as they were terrifying. I’d never had major surgery before, and here I was, amputating seemingly healthy parts of my body. It was difficult to process, it was emotional and painful. I hated asking my husband to help me out of bed, to please clean the drains that hung from my body for weeks. But at least, at least, I had reduced my risk of developing cancer drastically.
And in that first fight, I truly thought that I had taken the enemy out of the ring, before it even had a chance to swing.
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However, in June 2021, 8 months after my final breast reconstruction surgery, I found a small lump in the uppermost part of the axillary tail breast tissue, in my armpit. Something in my gut told me it wasn’t right. I knew I had to find out what it was.
I was so grateful that I already had an established care team in Genetic Support Foundation and my high-risk team and other specialists at Providence, so when I felt that lump, I knew just who to turn to. They got me scheduled quickly, calmly, and with compassion.
And they continued to show up for me. When my worst fears came true and my lump was confirmed malignant ( very rare outcome given the preventative surgeries btw), I was ushered into the care of a nurse navigator; when it felt like I was wandering lost down a dark hallway, it’s as if someone knew just when to put their hand on my shoulder and guide me to the next open door, the next sliver of light.
Needless to say in this room, it was a terrifying time in life. Learning that I had aggressive Stage3 cancer shook me to my core…. I have two sons…. I remember when I got the call that it was cancer. My then-14-year old was the first person I saw, and while I had remained cool and composed during my preventative surgery, I absolutely collapsed in his arms in a full sob. He was taller than me, holding me close in the first major role reversal in our relationship.
Telling my husband and 11-year old son, my mom and family members. It was all so devastating. And then came the slash and burn of more surgery, and chemotherapy, and radiation. I had hospital stays, and COVID, and a gazillion appointments and medications to manage. Over the course of nearly a year, we were in the trenches.
At the same time, my mother in-law had been diagnosed with liver cancer just a few months before me and my aunt with lymphoma just a few months after. (Both are doing well today, with my mother-in-law just receiving another successful treatment.)
This was also during Covid, as I’m sure many of you experienced as well. So my treatments were alone. When I was in the hospital for a punctured lung, and again with an infection, the halls were teeming with overworked staff and distressed patients. It was a difficult time for everyone, and a difficult time to be a cancer patient.
But my oncology nurses and staff were always so caring and kind during treatment. On my final day of chemotherapy, I wore a rainbow wig over my bald and itchy head. My care team sang to me, blew bubbles, and I danced and sang along. My family gathered in the parking lot, someone might’ve even popped a bottle of champaign? There were flowers, and posters of support. I hugged everyone extra tight.
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But as we also know in this room, the cancer journey continues beyond treatment. Some of us are no evidence of disease, others continued treatment. All of us human, and doing our best to move through each step with grace and faith. Humor, and yes, the outbursts of tears and expletives.
I have been on, and currently take, several medications to help prevent recurrence. These cause side effects that on some days, make my joints ache, my stomach flip flop, and leaves my legs as heavy as sandbags.
But it was through my days of deep emotional distress about my physical state, that I began to more readily notice signs of support from mother nature, too…
I had been so focused in my own little world of survival, that when it was time to lift my head from continuous prayer that I noticed the butterflies, and the rain drops, and the trees swaying in the wind – that somehow these things, so simple, and that I’d surely appreciated throughout my life, had somehow become MORE – and I began searching for joy and awe in the little things, and offering gratitude for the opportunity to see these things more clearly and vibrantly.
This month is my 3-year anniversary of being diagnosed. In reflection, all the things I have done to get through and to heal, have stemmed from support.
Support from family members, friends, care team, social media, online strangers, next door neighbors. I received help from a local organization, the Mayday Foundation, which provides support for families with kids under 18 at home and a parent with cancer – they provided a farm box for my family – fresh produce was delivered to my door all summer long.
I took advantage of the integrative care team at Providence, finding my way to healing modalities like oncology massage, acupuncture, and nutrition. Mental health resources like therapy and support groups. I’m still involved with that care as much as my ongoing clinical care.
My husband and I attended the Harmony Hill retreat here in Washington, where we both learned how to breathe deeply, talk openly, and remember what living in Harmony means. And where he learned, as a caregiver, his life and happiness are just important as mine.
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In all of these settings, I have been curious, asked questions, leaned into the offerings with an open heart and open mind, and in doing so, I inadvertently became support for others as well. Listening to someone newly diagnosed in a waiting room. Providing tips and tricks for chemo on an online Facebook group. I had an essay published in a parenting magazine about parenting teens while dealing with cancer.
I discovered it felt just as good to give support as it did to receive it. I find myself leaning into more of that service now.
Some of you may know of the Livestrong program at the YMCA, which provides people who have experienced cancer 12-weeks of free gym membership and programming around cancer strength and support – a much-needed resource in our community for people of all ages and abilities.
So when the Livestrong program came back to our local YMCA after Covid, I wanted to attend. At the time, only a day class was available. I advocated for an evening Livestrong program for those who may have daytime obligations.
The health and wellbeing director at the YMCA was also advocating for an evening program, and through continued discussion, they ended up providing training for me to be a lifestyle coach for the program—it’s crucial to their program that the coaches have lived experience.
At first, I struggled through the straddle or being both a participant and a coach. Some days were harder than others, tears welling in my eyes as I tugged on my workout shoes, but I allowed myself to be vulnerable with the group, and guess what? They showed up for me as much as I did them.
We got on those treadmills, we lifted those weights, we cried, told bad jokes, and ate lots of string cheese. And we spent 12 weeks, twice a week, doing our very best to feel better. Together, with the daytime cohort, we all just successfully completed the winter program in April. Shout out to any live-strongers out there! You’ll now find me at the Briggs Y most mornings before work, using the motivation and strength I gained in that program, and I plan to help with future Livestrong sessions as well.
I’ve found my way to other free programs that truly support people with cancer, seeking out adventure retreats, such as First Descents, for those under 45, where last September I learned how to surf in Santa Cruz. Yes, I caught a baby wave or two - Cowabunga - but more importantly, I learned how to trust my body again. I connected with other young people dealing with cancer, who also understood things like parenting, careers, and re-igniting romance.
Just last month, I attended a Boarding For Breast Cancer retreat in Mammoth Lakes, California, where I learned how to snowboard in the Sierra Nevadas, really feeling my strength that I’d built through Livestrong and surfing and physical therapy. I reconnected with myself and others once again, and with the beauty and awe of life.
Maybe it was the altitude, but I couldn’t help but think of my snowboard instructors coaching as a metaphor-- I had to write it down that day.: Stand tall. Don’t look at your feet, look where you’re going. Notice the beauty. Breathe. Relax. There you go. Sternum up. Trust yourself. Trust your gear. Trust others. Look up. Stand tall. Breathe.
I also overcame my imposter syndrome of attending a third retreat quickly remembering that these opportunities are out there for a reason – support. And that is something I never want to quit giving or receiving.
I’ve also realized writing is not only a great way to process these events, it may be a way to help others, too. So I’m also currently working on a memoir about these communities and individuals who show up for each other. The connections run deep with those who truly understand what it’s like to experience cancer for themselves or a loved one. And we know that continuing the journey toward wellness can only be enhanced by being around those who care. So, thank you all for showing up today!
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