It was a Friday morning, April 20th, 2018 to be exact and I was just about to board the train in Salt Lake City when I got the call.

“We’re so sorry but the results came back and it is invasive ductal carcinoma, breast cancer blah blah blah…”

I don’t really remember the rest of the call because I was focused on the task at hand, which was boarding the train, with my 4-year-old, to get to her preschool’s parent-teacher conference. I politely said, “Thank you for letting me know, I’ll call on Monday and see what the next steps are.”

My thoughts were rapid:

Upon boarding the train I noticed a friend of mine was seated close by. YESSS! Carly and I were both activists and organizers with the group Utah Against Police Brutality. My daughter and I sat down on the empty seat. I looked at her and calmly said “Carly, I just got a call saying I have breast cancer.” She looked shocked, as tears welled up in her eyes and mine. I said it aloud. We talked about it for a few minutes and then I kept it moving. I can’t miss my stop. I gotta get to that parent-teacher conference. Cancer can wait.

I’ve had an avoidant attachment style for as long as I can remember. It’s a not-so-great coping style that I was diagnosed with along with PTSD and chronic bipolar 1 disorder in the early 2000s.

Managing mental illness and breast cancer has been very challenging. In some weird way, this avoidant attachment style has helped keep me safe as I navigate this journey and all the other trauma I went through before and am still going through. I am working through this in therapy.

Sadly, it would take some time for me to realize how detrimental this avoidant style would be in regard to advocating for myself through treatment and finding support within the breast cancer community.

For instance, that cancerous lump?

I found it 2 years prior in 2016 and I did go get it checked out during my routine pelvic exam. My concerns were hastily dismissed by the provider that saw me that day. “You’re too young for breast cancer. You have no history of it in your family. It’s likely a clogged milk duct from breastfeeding.”

I almost felt ridiculous for thinking the worst. I’m not a doctor, that’s his lane.

The Treatment

A month after that phone call, on May 22nd, 2018 I had some additional scans done after finally meeting with the oncologist and I was told that cancer had spread to my lymph nodes and mediastinum. It was not stage 2 early onset breast cancer as they had said, it was Stage 4 ER+PR+ HER2+ Metastatic Carcinoma.

I remember thinking “Okay, it’s another hit. No worries, I’ll get through this like everything else”. I didn’t even know what metastatic breast cancer or all those letters and symbols meant, like really meant. I still thought I was gonna beat this. I had things to do.

Thinking about how I just want to be done with this shit, I nonchalantly thought “I have one of the best oncologists, so whatever she recommends is probably a good idea, Right?”

She said I couldn’t have surgery and chemo (Taxol, Herceptin, Perjeta) was my only option at that time. Maybe radiation afterward. I fought against it but no other options were given to me. My avoidant mind kicked back into action.

I waited over 3 years to find support and resources within the breast cancer community. I regret waiting that long and I shouldn’t have had to. No one should have to.

Grim Realizations

If I had sought out support, I would have been better informed about my options, about what to ask the oncologist, about what would help me during treatment. I wouldn’t have felt so ignorant 4 months later after my follow up pet scan showed that the chemo I endured every Friday for an entire summer had worked and I was now NED. No evidence of disease but you still have to come back in 3 weeks for treatment. “How long?” I asked.

Or did my oncology team not recognize that due to my mental illnesses, I may not have had the capacity, during a bipolar manic episode, to properly grasp what was going on. I needed a patient advocate. I needed extra support.

When I asked, finally, about stage 4 support groups, I was told “those aren’t for you. They’re for the people who are worse off than you.” I finally ask and I’m hastily dismissed, again. I believed them too. Besides, I was busy. My child and community need me. I don’t have time to deal with indefinite treatments and side effects.

A year and a half go by and I’m used to indefinite chemo now because that’s just how life goes and then the pandemic hits. Now I can’t go anywhere or do the things that kept me busy-like taking my child out, organizing, going to protests or helping the unsheltered folx and other marginalized communities. I was also dealing with an abusive ex and custody issues. No biggie. I always had an endless to-do list, instead of focusing on my health.

My avoidant, bipolar mind was forced to slow down. Now, I noticed the pain in my legs that never went away. Neuropathy. I noticed the fatigue that would hit me for days on end. If I had support, I would know how normal this is with others living with metastatic breast cancer. I wouldn’t have been alone with this new normal.

Seeking Community

So FINALLY I went and looked for some support. It only took me 3 years which I may not have had if my first line of treatment wasn’t still working.

“Why am I like this?”

I found and joined a few breast cancer groups online. I didn’t like them. It felt like so much doom and gloom and I already struggled with those feelings. But when I searched for groups for WOC/BIPOC, I found the Breast Cancer Baddies group on Facebook and the organization For The Breast of Us.

That led me to finding out about other resources as well like the organization Living Beyond Breast Cancer. I was no longer avoiding breast cancer. I was no longer avoiding making new friends that also have cancer. I was no longer suffering alone.

I found education, support and resources. I decided to apply to be an LBBC Young Advocate and completed their training a few months ago. Another advocate/ambassador, Miranda, connected me to FTBOU and now I’m a Baddie Ambassador too. I have shifted my activism to breast cancer advocacy.

I have a new purpose, to connect womxn like me to resources and to help them feel seen, early on in their journeys. I want to be who I needed at the beginning of my journey, for other folx.

I feel happier now, even living with metastatic breast cancer and being fully aware of it. These baddies have helped me embrace living as a metastatic thriver. I feel encouraged to speak up and share my story now. I encourage anyone reading this to not be afraid to get support and find community no matter where you are in this journey. No one should have to go through this alone.

We’re survivors and thrivers, in this TOGETHER.