Inflammatory Breast Cancer and Becoming a Death Doula

There are a lot of life experiences that led me to start my own death doula practice.  Possibly one of the most foundational was my own experience with an aggressive breast cancer diagnosis in my early 30s.

In January of 2016, I woke up one Saturday morning to find my left breast suddenly swollen, hard, and bruised.  It had seemed completely normal when I had gone to bed the night before, and this was a drastic change.  As I laid in bed, I typed my symptoms into google to see what might be going on – and every search result was the same “Inflammatory Breast Cancer.”  Surely not?  I felt around to see if my breast felt lumpy – isn’t that how you’re supposed to check for breast cancer?  I kept reading (and doom scrolling).

According to various websites, inflammatory breast cancer affected younger women than most breast cancers, was often misdiagnosed as mastitis, and was always stage III or IV.  If you were lucky to be in the former category, you only had weeks or months before it could progress – getting a timely diagnosis and immediate treatment was critical.  I laid there in bed wondering if I should wake my then-husband.  What would he be able to do about it?  Should I go to an emergency room?  It certainly seemed like an emergency to me, but I recalled previous visits with my step-kids where we sat for hours in uncomfortable chairs only to be discharged with a recommendation to see a specialist on Monday morning.  Is a specialist what I needed?  I googled “What kind of doctor can diagnosis breast cancer?”  

By Monday I was in an OBGYN’s office, and then on an ultrasound table.  Within a week I was receiving my first chemo infusion and going to specialists had become my full time job.  I had a plastic three-ring binder with color-coded tabs for lab reports, doctors’ business cards, and appointments I couldn’t remember.  And in the back of my brain – a gnawing awareness that although everyone was engaging with me calmly and recommending I just follow the treatment protocol and not seek details about prognosis – every doctor had an urgency and a seriousness that seemed alarming.

I joined social media groups full of women with similar diagnoses and quickly understood why: the “lucky ones” who were only Stage III would pop up a few weeks later to report the disease had progressed to Stage IV.  Other women would ask about members of the group they hadn’t heard from in a few weeks – had they died?  Had anyone talked to their families?  Suddenly the reality of the disease I was facing hit home – was it possible I could die from this?  Not only possible, was it a probability?  That couldn’t be right; I was only 34.  Obviously, some people die when they’re young, but I always assumed I would live to be 80 years old at least – holy shit!  Was I one of the ones that would die young?

The end of my cancer story is that I got another chapter of life – I was one of the Stage III patients for whom the treatment seems to have worked – and I’m eternally grateful for the information I had access to, the advances in medicine that influenced my treatment, and the medical professionals who kept trying new things when the old ways weren’t working.  But I didn’t know what would happen for the year of active treatment and the five years of hormone suppressants and bone infusions that followed.  And for six years, I felt like I was directly staring my own mortality in the face and it was dramatically isolating, life-changing, and primal.

Kate Bowler has a wonderful quote describing her own cancer diagnosis: she says from the moment she was diagnosed it felt like she was on one side of a pane of glass and everyone she loved was on the other side.  I found that to be so true.  No matter how much my circle of care wanted to support me, no matter how sympathetic they were, I was on this journey alone.  None of them were going to die with me if the cancer progressed.  Some people didn’t want to talk about it at all or even be around me while I was sick – they had their own fears to work through.  Other people really wanted to be supportive, but had absolutely no idea how.  Those closest to me showed up in so many ways, but also were working through their own feelings about this sudden change in my life and what losing me might mean for them.  I had wonderful doctors, calls from hospital social workers, and a therapist I was seeing on a weekly basis – and all of them played a part in helping me make it through this journey.  But somehow all of that felt like the chaos of treatment – lists of appointments to make it to, goals to achieve, pain scales to report.  I had an amazing faith community that showed up for me in a thousand ways, but even there it felt like something was missing.

I think for me, in the quiet moments between appointments, I needed someone to normalize what was happening to me.  In so many contexts, it felt like my story was one of heart-wrenching tragedy, a diagnostic or preventative failure, a clichéd reminder to savor every moment – I was the anomaly that could somehow inspire others – and that implied I was somehow different than everyone else.  Sometimes it felt like I was too hard to look at – even in hospital hallways and exam rooms, well-meaning providers used euphemisms for terminal illness and death that somehow sugar-coated everything.

The way this experience informs my practice as a death doula, is that I aim to recognize death – all deaths – as a natural part of the human experience.  One thing that is true for every one of us from the moment we are born, is that we will one day die – and there is something reassuring in the universality and normalcy of that.  We may not know how or when we will die – but universally, the experience of death is something that connects all of us.  We live in a time of medical marvels that may extend our lives or make certain illnesses chronic rather than fatal – but as a species we haven’t figured out a way to cheat death.  I don’t believe that fact should inspire fear or to be talked about in euphemistic language – I believe it’s intricately and intentionally woven into the rhythm of life.  That doesn’t mean that we won’t have a lot of emotions around death or a terminal diagnosis. I welcome the opportunity to bear witness to shock, anger, fear, relief, jealousy, and all the others when they show up.  But I think one of the greatest gifts of this line of work is the way it weaves experiences of death and dying into the lifelong tapestry of all our experiences.

The week I learned I might die from cancer was also, in many ways, just like other weeks.  I had been a jerk to someone I was annoyed with, I was frustrated with the way our pantry was disorganized, and I needed to drop my car off for an oil change.  There wasn’t some great shining light that appeared from the heavens and covered every day since then with a rosy haze; I’m still sometimes a jerk, my pantry is still disorganized, and (again) I need to take my car in for an oil change.  And also, I get the opportunity to walk alongside folks who otherwise might feel isolated, overwhelmed, and confused when facing their own mortality – and I get to normalize that experience for them where possible, to help answer questions, and to listen to their stories.