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Guest Blog: Interview with a Unicorn

Dr. Laura James with Colleen Broughton

In thinking about Survivorship this month, I asked a friend if she’d share some of her experience living with breast cancer for 11 years (9 years metastatic). Colleen is an “exceptional responder” to an immunotherapy clinical trial and a “unicorn” for living with metastatic Triple Negative Breast Cancer (mTNBC) for so long.

Survivorship is very personal, and people with metastatic cancer face unique challenges. I hope Colleen’s responses help increase awareness about stage 4 cancer and the reality of survivorship, and give you resources and strength for your own experience.

Q: Is October being Breast Cancer Awareness Month difficult for you or celebratory? 

A: October is a mix for me. I was diagnosed in October 2013, at age 43, after an annual mammogram. Before Cancer, October was untainted “Funtober,” and we did all kinds of silly seasonal things with family and friends during the fall. It’s not October’s fault: but if I’m honest, there will always be a layer of trauma about this month that makes me hold my breath to get through it. The time I have been gifted is genuinely amazing, and also: it has not been easy.

Q: You have been living with breast cancer for a long time. If you were to talk to someone recently diagnosed, what top three things would you tell them?

A: Oh, I have more than three! A metastatic diagnosis is shocking. It takes time to wrap your mind around the surrealness that daily life needs to be addressed, panic about time bubbles up, all while you face the heartbreak of ongoing treatment, and the shock of wrangling with mortality.

• Be gentle with yourself. Hearing you have stage 4 cancer is really devastating news, and you’ll need a minute (or year) to get your bearings. Please cry, rage, lament, and get your feelings out. Know that grieving (for all that cancer has cost you) zaps energy, so if you feel tired, there’s a practical explanation for your exhaustion and sadness. Whatever you need to do to feel hugged and comforted, do it without guilt.
• What’s Your Why?/Prioritize What’s Important. What or who are you living for? I had to really ask myself what was important (to me, my family and kids), and then fiercely only do the things that make memories, or curate joy (or both). I have made every choice in 11 years to earn quality time with my kids. When you are clear about what fuels you to keep going, it’s easier to let other things go (to conserve your energy, or allow for help) to then have the energy to maintain self-care (for sanity) and show up for the things that fill your soul. We are measuring time: be strategic with it.
• Find a therapist. Talking about my feelings, trauma, and grief every week with my therapist empties my emotional tank–which then allows me to be more present and calm with my family/friends, and to talk about topics other than cancer with them. Additionally, my OB/GYN encouraged me to get a prescription for anxiety meds, because the initial and ongoing volume of fear/panic is professional level. What a relief to have that kind of help on the days I need it (mostly around scans and news!). But I’ve had to vigilantly advocate for myself, and against the stigma of mental health medication (even with medical professionals).
• Find a Cancer Buddy (or healing group). Most newly diagnosed are not ready for a support group at the beginning. But as you start to experience people in your life who are not able to be there for you, or understand the ongoingness of stage 4 (it’s a marathon, folks, you’ll need a friend at every mile), please start your search for a “Cancer Buddy” (or group). There are helplines, mentoring programs, art therapy, healing circles, organizations, and groups that you may discover are the most safe and supportive places for you to be real about what’s happening. My cancer sisters are everything to me: they understand without explaining, they light the path ahead, and we laugh–a lot–at what a wild ride it is living in 3-6 month increments of uncertainty. I trained to be a mentor/match for Project Life MBC and Living Beyond Breast Cancer’s Helpline; please use any and all of the resources to get the support you need.
• Trust Your Instincts/Assertively Advocate for Yourself. If you think something is off: I believe you. It can be exhausting fighting insurance companies and so frustrating how treatment treadmills work. Do not give up on finding your own answers. Our medical systems (and schedules) are often set-up for the provider’s convenience and not the person experiencing the medical trauma. Feel empowered to ask for different timing that suits your life better. Feel empowered to get a second opinion. And if your team is NOT listening to you, or acting quickly enough, you have every right to find a new team. You deserve to maintain your quality of life and fiercely protect it.
• Understand “Living in Contradiction.” Through one of the many classes/workshops/webinars I have taken to practice stress-reduction, acceptance, and peace, I was introduced to the concept of Living in Contradiction through A Fresh Chapter. Akin to the idea of “balance” Living in Contradiction is when two (generally opposing) things are true at the same time, and you are the tension between the two. How you handle the opposition impacts your life.

  For example: I have stage 4 cancer AND I am at a lake with my friend with our feet in the water. I woke up with a horrible treatment headache AND my dog is so happy walking on the trail; the leaf colors are gorgeous today. I was at the hospital for a 6-hour infusion AND I made it (gingerly) to my son’s open mic night. I attended a funeral (for a friend’s dad) AND held a newborn nephew on the same day.

  We marvel at how things can happen that are on opposite sides of the happiness spectrum, and yet it’s typical of daily life to hand us something crazy and something wonderful and we must deal with both. Understanding that opposing things can be true at the same time has given me permission to hold conflicting ideas. I spend less time riding the emotional roller coaster of asking why. I now more easily acknowledge my challenges, then also allow all the goodness, joy, and love into my life (so I am not overrun by only the hard things).

  I also find this concept allows me to accept more hope, because practicing to keep myself in the center of life’s hurricane (vs. in the perpetual storm) lets me have more energy to enjoy what’s important to me: time with my kids.

Q: What local service has been the most helpful for you during your treatment for breast cancer?

A: I encourage people to make their own list of things/places/people that bring them comfort, because that’s so personal. It’s true that many comfort practices are practices; meaning you have to keep doing them to receive benefits. And finances (what is covered or not by insurance) are a real factor in prioritizing what to seek out.

At diagnosis,

• My local nurse navigator was a lifeline–because the treadmill they put you on is overwhelming, and I had so many questions at the beginning.
• I found that acupuncture and a TENS unit–through a sports medicine/PT office–gave me so much bone pain relief. Acupuncture has been helpful in forcing my body to relax, rest, and allow for healing.
• A friend gifted me The Book of Awakening by Mark Nepo. The format of a daily reading anchored my days in that first tumultuous year. Mark is a cancer survivor, so his words were so relatable.

During and after treatment, I have been buoyed by:

• Palliative Care – Meagan Blazey at Fred Hutch spens time genuinely listening to me and offers creative options to medication. If you don’t want meds (or if you do), Palliative Care is there to take the time to help you navigate comfort and quality of life.
• Naturopathic Care – In trying to sustain strength through treatment, I appreciate the care and time my naturopathic doctor spends finding natural solutions to side effects, and helping me maintain health. She also reviews supplements, and listens to my challenges in a way the oncologist doesn’t have time for.
• Team Survivor Northwest – This group of active women is motivating. You’ll experience all ages, all types of cancer and a genuine camaraderie, where cancer is not the focus, moving and living are. I biked the San Juan Islands, attended weekly workouts, retreats and galas. Don’t want to participate? Please donate! 
• Strolls for Well-Being at Bloedel Reserve – My field trips to Bainbridge Island to let the wind off the ferry carry my worries away, then wander and wonder at nature at the Reserve, have been some of the most healing times. Apply for one of their strolls or grief group programs, or download their guide to stroll in your own area. You will breathe easier.

Q: Are you willing to share what you tell yourself each morning when you get up?

A: I say, “Keep Going, Girl” and “There is good in every day.”

Some days are harder than others to keep going. Truly. Many days I wake up with aches/pain, low energy, eyes that need drops to open, a treatment-related headache, or side effects that take an hour or more of management before I can leave the house. There are so many days I don’t know how I am going to drive myself to treatment or humiliating appointments, because I hate going so much. I create timelines–so the pain seems temporary–to be able to get through it.

I have used a daily schedule that prompts for three things you are grateful for each day. That helps remind me of valuable moments in each day (and not toxic positivity; real gratitude). I have had to wear mantra bracelets, leave sticky notes on my bathroom mirror and car, and see a note when I opened my phone wallet. I have to phone friends, use temporary tattoos, request hugs, and go on field trips to stay uplifted. I even got a dog during COVID and he is 100% an emotional support each day. I heavily rely on yoga to help clear my mind and keep me balanced.

Even with my arsenal of tools, I want to have the grace to know when to transition from surviving to allowing natural death, but that’s not yet. I am still here. Every day I survive, no matter how messy that looks, is a day my kids still have a mom.

So in the meantime: One hour at a time, one day at a time, week by week: whatever mantra or time increment helps you… Keep Going.