The Dualities of Living With Metastatic Cancer

Good morning. Ugh. What a dream. Dr. 10 Barbie first met with me on March 29th, 2019 to talk about my upcoming mastectomy. She walked into the exam room, sat before me and said, it is such a pleasure to meet you, Tabitha, and I’m so sorry we’re meeting like this. Ugh. That greeting took my breath away. Did.

First off, did she just acknowledge that I’m a person still worth meeting? And did she also just acknowledge that she sees me as a whole person and not just a person she’s there to fix that we’re on equal footing here? Yep. It’s exactly what she did. She held two honest and conflicting things together in empathetic harmony.

My husband will tell you that I am still alive because of her. It seems that noticing the dualities of life’s often conflicting coin and the role that empathy can play in excavating them is exactly, and the most amazing part of the lessons that I’ve learned from cancer, the gifts that it has shown me.

But it isn’t just about noticing them, it’s about wanting to scream them from the rooftops. I wanna be deeply honest about them. I wanna be deeply honest about them. With the people I love. I wanna be deeply honest about them. With the people who are working so hard to keep me alive, I wanna be deeply honest about them with you.

Why? Because holding life’s dualities up to the light, especially those I’ve experienced since becoming metastatic. Is exactly what allows me to show up as my whole self to all of it. The living, the dying, and the legacy I hope to leave behind. Most importantly though, it invites me to center my aliveness and not just my living.

The way in which these dualities tend to come to life for me most clearly these days is in the form of these graphic t-shirts. There are probably some in the audience right now with the cheeky sayings, right? But what I’ve noticed over time is that these t-shirts tend to only have one side of living’s coin emblazoned across the front, and it tends to be the positive side most frequently.

Let’s face it, the way our people and our providers like for us to show up. The T-shirt that says Choose happy. I just saw one the other day that said, just manifest it. Awesome. Or the one that promises all will be well, if you just have tacos and margaritas, that one actually might be a full stop. Hashtag blessed.

You bet. I am hashtag blessed and I’m also hashtag totally fucked. Let’s be honest. Imagine how much easier it is for my best friend, for example, to show up for me to honor and validate my experience of life right now and the myriad of emotions swirling around in that experience. When I feel safe expressing that full range of feeling good vibes only.

You bet. Ask my daughter. I am all about good vibes, but only there’s a lot about this country right now that is filling me with rage, vibes. I’m also gonna bring sad vibes about the demonization of public health. Something I never thought I would see. I promise. Thank you. I promise you cannot count on me to show up with only good vibes because if I do.

I’m not showing up to our connection, our interaction as my true self, and that will have serious implications on my legacy. So you ready to hang out tonight? Earlier this summer, my daughter was visiting and she and I ended up in a department store. My husband will tell you that sometimes happens. I was actually looking for a t-shirt and at one point Harper called me over and she’s holding up this t-shirt.

With these beautifully colored tiles that spell out better luck next time.

Could you imagine seeing that on a bald woman with one boob? Anyway, Harper went off to look at something else and I stood there holding the t-shirt up, trying to figure out what the other side of it would say. If it were mine. I got cancer as a white, cis, straight, upper class educated woman with really good health insurance.

My red to my skin color, swollen breast. No lump was taken very seriously by everyone in urgent care that day. I was scheduled for a biopsy the very next. In so many cases of inflammatory breast cancer, black and brown women’s symptoms are minimized, called an infection. They’re prescribed multiple rounds of antibiotics, and at stage four, they are curative.

Intent is out the window. The drug that I’m on for triple negative metastatic breast cancer was tested primarily on women who look like me. Black women accounted for seven to 7.4% of clinical trial participants, even though they are more likely to be diagnosed triple negative, more likely to be diagnosed metastatic, more likely to die from this disease.

Better luck next time. I pretty damn lucky, but I wanna be very clear. Health disparities that a result of health inequities have absolutely nothing to do with luck. They are about historic systemic injustices. They are about intentional, ine equitable distribution of power and resources. They are about racism.

Thank.

The thing about the dualities a person is living in is that you can’t guess what they are, especially in a healthcare and cancer culture, wherein patients can be expected to show up in their battle gear or their cheerleading uniforms. When I walk into the cancer center, I met with a sign that says, hope lives here.

You bet. And lots of other thing. Things live here too. And aren’t they just as important to honor what instead? The sign, red Hope lives here and so does fear and everything in between. We are here for all of it. So this is where you come in. How are you making sure that the people you love, the people you care about, the people you treat.

Know and understand that you are indeed here for all of it. That you’re not going to turn away from the difficult things that you’re going to show up and, and be so excited to excavate. All that lies between together. I’ll tell you how. Empathy with a healthy dose of good listening I. So I recently moved to a new state, which has meant lots of clinical encounters with new providers.

I was most excited about meeting with palliative care, not because I was having trouble with symptom management, but because it’s important for me to establish a care team that knows me when I feel good and thus best able to communicate my North Star for decision making about my life and hence my eventual death.

This doc whizzed into the room, made fun of my name for like two full minutes. Ben moves straight to why I didn’t have a medical power of attorney on file and questions about my advanced directives. I think we were maybe six minutes into the visit and she leans back, process her arms and says, so tell me this.

Do you want us to give you CPR? Even though in 85% of the cases, we may break some ribs.

I just came here for a nice chat. She then moved to my pain chart. I had actually marked it pretty low that day, but I was having some residual headaches from the pre-infusion steroid. I ended up with a prescription for oxycodone. Uh, she made sure I could have Narcan at home just in case, and a follow-up visit in three weeks.

As you can guess, I probably did not make that appointment. Have not been back to palliative care.

I’d like to invite you right now to think about a person that you love or care about. So a patient, a friend, a family member, someone you love, recalling your last interaction with them. What did their T-shirt say? Did they show up with just one side showing the whole time? If it was the good vibes only side, what questions could you have asked to invite a more nuanced view of their life right now?

Wow. It sounds like you’re doing an incredible job spinning all of those plates. Tell me, is there anything that feels like a heavy lift right now? Was there t-shirt blank? If so, did you try listening for the emotions under the words, reflect those back to them to see if you could dig a little deeper together.

How did the T-shirt you wore impact their willingness to take their jacket off and turn around my t-shirt lately? Well, next week I will have my three month scans again. Yes, the week of Thanksgiving, chest, abdomen, pelvis, and brain. Things will either be stable or there will be new cancer or new growth to tend to.

I’ll lay my head on the pillow that night and say to myself, this may be the last night before the real end begins. About a week after that, I’ll celebrate 29 years of marriage to the most incredible husband who I’m really testing the boundaries of our vows in many ways. A few weeks after that. I’ll celebrate and I mean, celebrate five years of metastatic disease content wanting so much more.

Imagine when you, the deep richness that would come from follow-up questions about that t-shirt. It has been such a pleasure and an honor to share this space with all of you today. And yes, I am so sorry we’re meeting like this. Thank you.