Technically, this last year was a tough year but, in fact, a year ago I was six months into failing chemo after chemo to handle my first recurrence. My options were not looking great as I penned an essay Expiration Date that I cut and paste below. (Please feel welcome to share.)
Expiration Date: an essay on Livingly Dying
I was once known for buying deals on almost-expired meat. However, I didn’t limit myself to expired meat but that behavior earned me top notoriety in my friendship circle. Taking expiration dates too seriously was never my thing. Expired cold meds even seemed to offer an occasional high – who knew?!
These days I am grateful for my common sense attitude toward dates as I stare down the ultimate expiration date – my own. One month into my 51st year I was given a 10% chance of being alive in two years.
People say funny things as they attempt to comfort the terminally ill while managing their own fears. One common statement reassures that, “We are all terminally ill. You just know it”. “Harrumph,” I think. I do know. I more than know it as my weary veins dodge yet another dose of toxic poison infused with the knowledge that it will bring me to my knees with exhaustion, nausea, brain fog. Slight consolation is the hope it will keep me alive awhile longer.
When first diagnosed on April 22, 2010 the doctors made every effort to be factual but tactical. Incurable and metastasized were mentioned, but not terminal, not palliative care. Yet every appointment from then on seemed to include the statement, “You will die from this disease.” It was like a boot camp mantra – getting me used to my new normal. I was in shock but I could still rebel at that edict. “How dare they,” I fumed. But then one day I realized the only way to avoid dying of this disease was to have some other tragedy end my life. What kind of victory would that be? Would my oncology team really be impressed that I managed to get run over just to avoid suffocation by cancer? I finally accepted I would not die of old age, but from ovarian cancer.
I have learned a lot about advanced ovarian cancer. It is recurrent, relentless and fast to adapt to any chemotherapy sent its way. Ovarian cancer is not a particularly painful cancer. I like to note, “my people die looking good.” We tend to move in and out of treatment, giving us some much valued recovery time, which is further boosted by steroids when in treatment. It seems wrong to call our form of cancer a wasting disease. One day the doctor will simply inform me the cancer has outwitted all the chemo types available, and treatment will end. I will then enter hospice and die soon thereafter – looking pretty much like I always have albeit possibly bald and ten pounds heavier courtesy of those steroids. I claim the ovarian cancer sisterhood as my people now, because they teach me how to live and die by example. It is a tough group of women constantly being whittled down with funerals and then expanded as the newly diagnosed walk in.
I stand on a particular type of death row. I have been sentenced, but some vague appeal process offers me the possibility of being an outlier – one of the few who survive for over a decade despite the dire odds. No one knows why. Unlike an actual death row inmate who is confined in every aspect of living, I have freedom of movement, tethered mainly by treatment timelines, financial realities and other choices. What I am denied is the freedom to assume I will be alive three months hence. What started as an insurmountable burden I am learning to accommodate. I move from solitary confinement, to a shared cell and then to a mere ankle bracelet with frequent calls from my parole officer. It is inconvenient but not intolerable.
For me, I cannot live without hope. When I think of my death as truly imminent I feel a grief that I now see as pointless – I just don’t have the time for such sadness. I choose to save those tears for when I am told it is time to contact hospice and then I will move into that final phase of acceptance. My current mandate is to live with the shadow of death seated comfortably on one shoulder – I rarely forget but I often dismiss my new companion. Parameters are drawn.
Prioritizing hope does not require me to feel optimistic. I am especially clear eyed right now as I endure my first recurrence too soon for it to be a positive indicator. Worse yet, my cancer has only grown after eight months of renewed treatment on multiple chemos. (Please note: one year later, April of 2013, I am closing out a new chemo regimen that seems to have moved me towards remission as well as entry into a cutting edge clinical trial.)
I have made a certain peace with leaving this world, a comfort experienced only after considering what I might do, where I might be, what I might become after I die. What’s the harm in daydreaming my possible death future? The worst that can happen is that I am wrong. I live in a culture that offers few possibilities around what dying means to the person who has died – it is either viewed as THE END (with many finding spiritual solace in turning into humus for the ages), or viewed in mythic versions of heaven and hell. Neither option works for me.
Weeks after my diagnosis I sat in the Spring sunshine by a burbling creek at our homestead. My sweetie was doing the chores that I was barred from doing post surgery. This was a favorite resting spot of mine. The chickens made their comforting sounds in their enclosure to my right while the more rambunctious ducks blurted out their loud, harsh and comical sounds in the pasture to the left. The garden emerged behind me. I was surrounded by so much that I loved. The warmth of the sun reached every nook of my body. The tears I cried were happy ones. Why could this not be my heaven? Why couldn’t I decide that here I would reside, barred from engagement with my former world, but observing it more happily than not? I make the choice to imagine my next world much as Peter Pan declared, “To die will be an awfully big adventure,” even if he imagines his death more boisterously than I do mine.
I have heard of stoic, terminally ill people who chose not to burden others with their diagnosis. I have yet to meet these people. Others allegedly fear being defined by their illness. My response to the diagnosis of terminal cancer was to count down until the first remission allowed me to get a large tattoo on my wrist declaring me a Cancer Warrior with the script positioned for any newcomer to read. Every bag I carry sports a button stating, “Cancer Sucks”. I dare the world to ignore my diagnosis just as I defy any attempt to limit me to my diagnosis. I bike everywhere, slowly to accommodate the damaged body, wishing for a banner across my back to allow those swiftly passing me to know that I am biking despite cancer in my chest, abdomen and pelvis. What a small way to proclaim what it means to live fully with your expiration date. How comforting it might be to the newly diagnosed to have such models.
Two years in and my closest friends increasingly challenge what they see as my negative self-talk. I am in palliative care. I have been in palliative care from the beginning. I missed the few curves that could have portended improved outcomes – longer survivability. All success is measured by longer survivability, especially by me. I recurred too fast. The cancer is now ten nodules versus a few which would be possible to grab via surgery. Yes, I think palliative. I hate it but I would hate more missing this closing phase of life by pretending things were different.
Deep inside I continue to work on a story line that allows me to live – I fall asleep to the effort, I awake to the possibility. I pray for a miracle knowing that, really, only a miracle can save me now. The deepest part of me still believes I will survive despite my intellectual clarity that advanced ovarian cancer is almost always terminal. I just can’t imagine saying goodbye so young. And then I fret; maybe I did talk myself into recurring so fast.
I get my affairs in order. I avoid paperwork at this phase of life and focus instead on my closure — painting rocks for memorial service party favors to be remembered by, quilting for loved ones, making time for conversations I would rather not have. I have written up a burial plan.
I live on death row in a lovely neighborhood, in a lovely house surrounded by perks that don’t eliminate the sadness of departure. I hold my pink slip from this world. My life stays filled with joy and meaning as well as a mantle of sadness – the former only enriched by the latter. Years prior I wondered, as do many, would I rather die unexpectedly – poof, be gone? I suspect not. I like to orchestrate. I definitely intend to script this phase of life and be thankful for the opportunity.
Some days resentments push forward. I know how much fun retirement would have been with all my friends. Will I really have to miss the magnificence of the maturing front yard that I’m planting this Spring? Will someone else match my devotion to what I leave behind of my life?
My expiration date has passed. I live. Today is another day on death row. I embrace livingly dying, in the words of the late Christopher Hitchens, and I am grateful for this luck.
Marcy Westerling – Oregon
written Spring of 2012