Musings on Grief Awareness Day, 2021
As I type, here in 2021, I have lived with stage IV metastatic breast cancer (MBC) for four (4) years. That's four (4) years of appointments, fourteen (14) specialists, and counting, six (6) surgeries, multiple biopsies, including bone biopsies, so many vials of blood taken for bloodwork, several blood transfusions, IV chemo, two lines of treatment (that includes 3 different targeted treatments), an aromatase inhibitor, then monthly shots in my butt, Lupron shots (before the radical hysterectomy and oophorectomy), Xgeva injections, then Zometa infusions, six (6) tattoos, 1000s of articles read, "meeting" doctors on Twitter, "meeting" dear friends on social media, many conferences attended in person and now virtually, dear friends made and lost, newly diagnosed friends made nearly daily, advocacy meetings galore for myself and others, lots and lots and lots of phone calls with my insurance company, at least 10 people I wanted to tear apart with my bare hands for idiocy, kindness from strangers, and so much more.
In short, the last four years have been brutal.
Emotional impact of MBC
The objective visits or experiences I listed above are hard enough to think about in the abstract, but what is often hard to capture is the sheer weight of the emotional aspects of this ongoing and never-ending experience. As with an onion, there are layers and layers below the surface, just waiting to see the light of day. Over these last four (4) years, I've tried to peel back those layers to deal with the underlying struggles.
And what I consistently find underneath the anger and action is grief.
Grief with a terminal illness
I grieve for the person I was before my diagnosis with a terminal illness.
There is a defining line before and after that news was given and digested. Sometimes I look back at pictures and my journals and I almost don't recognize that person I was. I get some glimpses now and then, and I often react as if I was still that person. But I'm not, in almost every way. I miss that person, her energy, her optimism, her drive, her ambition, her focus.
I grieve for my family and how much they have already lost and what they will lose as I decline.
My husband, two boys, and I live with my parents for a variety of reasons. Every day, I have a front-row seat on how my illness has affected those I love the most. Knowing that I have already hurt and will hurt them, even more, breaks my heart daily.
I grieve for my autonomy and how tied I am to the medical treatment that keeps me alive.
Everything I do or want to do has to fit within my treatments and the thought that I need to be close to a medical facility just in case. I have many many squabbles with the support staff of my cancer center about them scheduling appointments without talking to me, without treating me like a person. Yes, I'm pretty myopic about this issue and I can't just let it go because it symbolizes how I feel so helpless and vulnerable in the face of this disease and the treatment. That's one of my deepest fears, to be vulnerable with untrustworthy people. And to be an MBC patient is to be vulnerable every day.
I grieve for my friends, the healthy and the ones I've made in the MBC community.
My friends who are healthy have to watch how the disease takes so much from me and they struggle to understand. The friends I've made in the MBC community understand, their struggles are so very familiar to me and we watch each other waste away and die all too often. To enter into relationships with people who face death every day is oh so precious and oh so hard.
I grieve for our culture and how people who are ill are treated.
That fear of being vulnerable rears its head again and I often jump into advocate mode, but underneath I am brokenhearted. Our health system and so many other challenges we all face every day can tear us apart when we need peace the most. While it is often satisfactory to win argument after argument about coverage for meds or testing, the energy it takes to wrestle with the cancer center, my insurance company, and all the various people who have to sign off on various things depletes me like nothing else.
Coping with grief
These griefs can feel overwhelming, soul-crushing, heart-squeezing, mind flattening, and I've often experienced deep valleys of depression while working through my feelings and grief, especially since I often feel all of these things all at once. I certainly don't have all the answers and would love to hear from some of you about what works for you; at the same time, here's a few things that have worked for me.
Feel all the feelings, don't push them aside
When I push away my feelings to get through an experience, it helps in the short term to keep me focused, but then the feelings come out sideways, usually on some hapless scheduling person who was trying to help.
Don't think you can do this MBC thing alone
We need people in our lives to remind us to live, to walk alongside us, and to show us different ways of handling what could crush our spirit. For me, a combination of people inside and outside the MBC community is what keeps me going. There's a line in a poem I read once (the title or author I can't remember) about sitting together in the "shards of our shattered life."
Prepare to carry the grief, not get over it
Grief is a part of living, it never leaves us. Once we experience grief of any kind, rather than attempting to get past or over it, learning how to carry it forward is how we find life amidst the grief. Pushing it away or accepting an unrealistic expectation of a timeline will only make that grief come out sideways again.
Don't should on yourself
Everyone does this grief thing differently and it's not linear. I think the stages of grief concept is helpful at times to understand and label our feelings, but the downside of accepting that there are stages of grief can lead one to an expectation of moving through the stages and being done. I see grief as either cyclical or like the waves of the ocean; the experience isn't linear.
We all have that inner critic, who comments on how and why we do things. That inner critic can be your worst enemy in grieving. We all need to turn our most empathetic and kind perspective on ourselves first.
Learning to carry grief
There is no right or wrong in grieving, just learning to carry it as we keep on living. And on grief awareness day (and every day), I urge everyone, including myself, to be gentle with ourselves and others as we learn to do this living while dying thing in the midst of grief. As we learn more, we can do this thing better and do it in this community, together.
Have you ever changed your treatment regimen because you were experiencing side effects?