Am I doing this right?

Do you wonder and ponder this as much as I do?

During a recent visit with someone with a Masters in Social Work through the palliative/supportive department at one of the cancer centers where I’m treated, this was my burning question. I’ve not counted up the numbers of people I’d describe as dear friends who have died since my diagnosis with Stage IV Metastatic Breast Cancer (MBC) in 2017, but a whole lot have died in the last few months. And that’s not counting the number of people I know who are in hospice or nearing the end of the lines of treatment available to them and I know what’s coming next.

And so, with all of these experiences, which seem to grow exponentially heavier the longer I live with MBC, I begin to wonder if I’m doing this MBC thing right.

As I listed out all the things that I’ve learned to do to handle my grief and all the hard things that we face every day (and it’s a long list), the dear lady I was speaking with stopped me and asked me to consider if that was the question to be asking. She asked me to sit with the idea that maybe there isn’t a right way to “do” grief or to “do” this living while dying thing. She asked me to consider if wondering if I’m doing things “right” was the most productive focus of my time/energy/effort. She asked me to consider where in my body I was feeling these hard things. She asked me to thank my brain for doing such a good job of protecting me from hard things and to ask it to take a bit of a break.

As I sat with the feelings and the yuck that led me to ask this question and was encouraged to experience where these feelings reside in my body, a few things bubbled up …

First, when I think about MBC and losing people and so many hard things that are part and parcel of this experience, I find it hard to breathe. So I suppose the answer to the question of where I feel the pain is that’s it’s primarily in my chest. Maybe there’s a little heart pain there too, but mostly I feel as though I’m gasping for air, but more metaphorical than physical. Sometimes the moments where it feels like this are spread out and sometimes it’s a near constant thing. But it’s also pretty paralyzing. Yes, I’ve developed rituals and ways to care for myself, but it’s also just really really really hard to keep going sometimes.

Second, while developing ways/methods/rituals to carry things like grief and loss and other struggles is not a bad thing, focusing on “doing” something versus feeling the feelings can be detrimental. As much as I’ve worked to face reality and be intentional about not glossing over the hard things, I’m still human and we humans run from pain. I’ve been running from the pain of grief and loss and carrying terminal cancer in one way or another since I was diagnosed. Sometimes I can slow down, but this pattern is pretty engrained. My brain does do a good job of protecting the rest of me from feeling those hard things.

Third, I often forget and/or avoid the cathartic value of tears. When pain and grief and struggle and all the hard things build up but have no outlet, that causes more pain. I often begin to feel this existential pain as physical pain and then keep running from feeling that too as well as needing to take more pain medication, which then affects cognition too in a vicious vicious cycle. Slowing down, focusing on being in my body and feeling all the things is not fun; at the same time, I know that I feel lighter when there are opportunities to let/get it out. Tears, for me, are usually a primary gateway, but there are others too. Spending time in deep conversations with others who truly get the MBC experience is another.

Fourth, the longer I live with MBC, the harder it’s been for people around me not living with MBC to grasp what it’s like. Doesn’t mean that people around us don’t try or aren’t able to understand at all, it’s just that those with MBC get it more, get it deeper, get it easier and with less explanation. When we’re grappling with so many things, having to explain and translate to others who aren’t in the same muck can be a really heavy lift.

Fifth and finally, letting go of the desire to make things perfect, to get it “right,” is and has been a lifelong struggle for me. I did think that MBC has taught me a bit about this and I’d hoped that I’ve made some progress towards letting go of this pattern of living, of thinking, of striving to get things right. Seems that I have still farther to go. It’s true for me that it’s hard to let go of what instinctively feels correct in the moment, which is usually old patterns.

And so today, I’m working on not striving to do this MBC thing right or perfect or better or whatever the label is. I’m working on being in my body versus my head and acknowledging the hard, the grief, the struggle, the muck, and the yuck.

Sometimes, most of the time, MBC sucks.