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Kelly G. on June 25, 2024
I was Diagnosed with:
Luminal B HR+ HER2 equivocal breast cancer
Employment Status:
Full time employment
Gender/Age:
Female/54
Type and Description of Treatments:
Four surgeries, four rounds of chemo, 26 radiation treatments and AI (which I ultimately discontinued due to reduced-quality of life (side effects.))
How do you feel today?
I'm charging forward as a dedicated advocate for breast cancer access to care, insurance regulations and testing. I'm fortunate my employer supports this.
Since the diagnosis, what has changed in your life?
2021 was a difficult year. My mother died in late 2019, I moved in 2020 to be closer to Dad when suddenly my partner Will's dad died. The day after Ray's death, my dad became very ill and needed six months of intense care in my home. (In the depth of COVID.) Turn the calendar to 2021 and I'm diagnosed with cancer in early February. My head was spinning as I imagined my frail father out-living me. Treatment was extremely hard, and I continued working part time. What has changed? ADVOCACY! My passion to find solutions before my daughter's face anything like what I endured. Helping my cancer tribe get the care they need. Stopping the financial toxicity of illness. Living for joy.
What is going well for you right now?
Right now I'm no evidence of disease. Because I could not tolerate the AI meds, I'm very high risk for recurrence. So I focus on positive mental health. I'm a runner and I smile, and relish each race with gratitude. I fully immerse myself in my family and travel with them often. And when I am really in the moment, I can feel the power of laughter and happiness fill me inside.
What is not going well for you right now?
Ugh, the fear of recurrence or metastasis is real. It's hard to trust my body. I thought I did everything right... Never smoked, ate a near vegetarian, clean diet, and I ran throughout the year. I have always given myself grace and had a positive (often rosy) outlook on life... Then cancer. Trusting my body is no longer easy. I have new anxiety, trouble sleeping and all the long-term side effects you'd expect. I learned recovery is not quick or easy.
What has been the most challenging thing about having cancer?
The most challenging part of having cancer is helping the people in my life (who have not faced anything like this) understand me. They want cancer to be over...it never will be. I was asked once if I was happy now that it was all behind me. It never will be...I said, "cancer isn't something that I can watch in a rear view mirror. It's buckled in next to me in the front seat. I can drive forward...listen to beautiful music, go where I want to go... But it's not behind me, and never will be." That is so hard for people to understand. I have discovered that I love honesty...and saying, "if cancer comes back I will retire immediately" feels like freedom to me, but makes other people very uncomfortable.
When difficulties overwhelm you, where do you go for support?
I found the people with similar experiences (even if they didn't have cancer specifically), where life turned up-side down, but human spirit endured, are my kind of people. When I'm overwhelmed, I look for honesty and laughter...I am not interested in sugar coating reality...but I dont want to wear my experience like a battered, tattered old coat either. So lets say it like it is and then make each other laugh. Let's share what hurts, what's scary and then sing about our blessings. My friends with this type of gift are my people, and I love them eternally.
How have your long-term goals or life goals changed since diagnosis?
Oooh, you know, my goal has always been to explore. Whether I am close to home or far away, I like to dig into the richness of where I am. After diagnosis, I don't sweat traveling and investing in my experiences. I welcome that while I can easily get along with nearly everyone, I'm not everybody's cup of tea, and that's ok. I work to soak in each moment in the short term and I plan for wonderful surprises in the long term. If I can make something an adventure...right now, I will.
What is your work arrangement right now? What are your hours?
I work full-time. That is to say 45 to 55+ hours each week. I'm not proud of it. I promised myself after cancer I would not do this again, and with distance comes amnesia...and I forget my promise. I do really like my job, and I find it to be fun, challenging and full of variety. But I know I need healthy balance and lower stress...I am just still learning how. It is a process.
Since the diagnosis, what has changed in your work life?
Well, like I said I wish my hours had changed. While they haven't really, I do know how to celebrate my team's wins. I am very empathetic and I listen really well. What has changed the most is that when I recognize I am at my limits...I stop better. I accept help better and I love the feeling of success at a job well done.
What has helped you continue to work the most?
My boss played a huge role in my successful navigation of treatment, recovery and return to work. Maybe my company could have done as well without her, but I doubt it. She has shown me how to be a great leader when an employee is in crisis.
What advice do you have for others trying to work through treatment?
Be good to you. Work can be an inspiration to keep going, or it can be a source of unnecessary added stress. So many times you'll hear care team members say, "what do you want to do?" And that normally makes me crazy, I am not a doctor...but in the case of work... it's an excellent question. Do what feeds your soul. Maybe that is rest and pulling inward for a while, and maybe that is staying in the mix without missing a step. We are all so different, and navigating treatment is hard enough. So be gentle and honest with you. You'll ultimately not regret the extra days caring for your mental health and resting. Simultaneously, a healthy and fun workplace can feed your energies too...self assess and be true to you.
How have you dealt with any side effects of treatment?
I became bold! Treatment is taxing, it drains you in ways you'd never expect. The side effects, particularly when I was on AI drugs, included intense bone pain, constant joint and tendon pain and swelling, crippling back joint issues and extreme tissue dryness. Not to mention loss of sleep, hot flashes and memory problems. I sought help from a clinical trial for people with extreme drug reactions. The trial meds didn't work for me and after trying three different types, I asked my doctor if we could stop. It is a personal, difficult and complex decision to stop that treatment. "What if" happens a lot. But I do live healthy, and quality of life is so critical to achieving my running and travel goals. I'm a better partner, mom, friend and person without chronic pain. You and your doctor can make the best choices for you, so make sure you play a role in deciding what your care journey looks like. I believe in science and medicine and myself to all work together.
If "today's you" could give advice to "day-of-diagnosis you," what would you say?
While it isn't going to be easy, it is doable. While the trauma of treatment is real, the future of advocacy is powerful. You can do hard things and as my dear friend says, my track record for getting through hard times is 100%. Be kind to yourself. It's okay to wear the wig. Movement is life so don't give up running and walking. And call those you love...they will help you and they want to help you.