Dr. Villaruz, my oncologist, called me on Tuesday, March 31 about my blood biopsy results. I have been too busy to post this update until now. I was standing in line to ask the Provost a question during the Faculty Senate plenary when my phone rang (thankfully, it was silenced). When I saw the 412 area code, I knew it was UPMC. There were like 4 people in line ahead of me, so I stepped out to take the call. In sum: There is no evidence of cells with the EGFR mutation, which is what Tagrisso is targeting! So that is great news.
There are some other mutations, but apparently there is no
way to determine if they come from cancer tumors versus benign sources. (Dr.
Villaruz said something about a condition where the body generates mutations
that aren’t cancerous. I was not at my computer, so I couldn’t write anything
down. I’m still kind of vague on this point.) Since the nodule has grown 3mm
since last August (now 13mm), Dr. Villaruz is going to consult with a
radiologist about radiation. The plan is to meet with the radiologist at my regular
appointment on April 16. So it seems my pulmonologist and oncologist were both
right: Tagrisso is still working, but it’s a good idea to zap the nodule. I
still don’t appreciate that my pulmonologist caused me emotional turmoil rather
than first consulting with Dr. Villaruz.
When I got back into Faculty Senate, the line was gone and
the time to ask questions was up! (These meetings often last 4+ hours, so they’ve
started putting time limits on questions for administrators.) I objected to
ending questioning, assured them that it would take less than 1 minute, and got
my question in.
****
Recently, someone posted an article from the Guardian in a
lung cancer Facebook group: “I have stage four cancer – there will be no cure,
but death isn’t necessarily imminent: this is how it feels to live in the long
middle.” https://www.theguardian.com/society/2026/mar/22/i-have-stage-four-cancer-there-will-be-no-cure-but-death-isnt-necessarily-imminent-this-is-how-it-feels-to-live-in-the-long-middle
The author captures so precisely what it is like to live in the liminal “long
middle”: to have late-stage cancer and undergo constant treatment while also living
a full life, thanks astonishing advancements in medical research.
To learn what it’s like to walk in my shoes – and those of
anyone living with cancer as a chronic, incurable disease – please read this
article. The author and I are ~1 year apart in age and were both diagnosed in
2022. Unlike her, I no longer struggle to breathe, I don't experience fatigue, I have
not undergone surgery, and (unfortunately) I don’t have an in-person cancer support group.
Otherwise, much of what she writes aligns with my own experience.
Here are some quotations that stood out to me:
“I am not a ‘survivor’ in the triumphalist sense of the
word, nor am I imminently dying. I occupy the long middle – a rarely charted
territory where the body remains fragile, treatment constant, and life does not
so much move forward as stubbornly persist. This liminal state is a distinctly
modern byproduct of a medical revolution….As a psychologist, I view this not
just as a medical victory but as a profound existential shift: we have replaced
the suddenness of the cliff with the tenuous permanence of the high ridge. Such
a progression has inadvertently birthed a new demographic: the “chronically
terminal”. We occupy an interstitial space, standing in the spectre of what is
destined to take us, yet still burdened with the responsibility of being within
the world.”
“While science is rebranding metastatic cancer as a 'manageable chronic disease', our social and psychological maps have failed to
update. This progress has carved out a profound 'survivorship gap'. When you
are cured, the world cheers; when you are dying, it mourns. But when you are
simply maintaining, the world is at a loss. We navigate the “scanxiety” of the
quarterly CT and the eerie, metallic hum of the MRI, planning for a future that
medicine hands back to us one prescription at a time. We are playing in the 'extra time' of a match where the whistle refuses to blow, except the
scoreboard has long since stopped working.
This absence of a final whistle necessitates a new, tempered
kind of stamina. Here, strength is rarely about the “'ight'. Military metaphors
such as 'battling' and 'warrior' are a leaden weight for those of us who cannot 'win' in the traditional sense.”
***My aside here: Please do not call me a warrior, survivor, or
refer to my “battle with cancer.” I recoil when I hear these terms applied to me or others who didn't choose them. If these terms resonate with others, that's great, but they don't with me. We
don’t use these terms for other diseases (heart disease warrior, diabetes
warrior, autoimmune disorder warrior, etc.). Why are they reserved
for cancer?
Back to the author: “Most of us live by chronos [time]: the quantitative time of
the clock, the five-year plan and the corporate calendar. It is a predator that
treats every passing second as a theft. But the long middle demands a migration
toward kairos: a qualitative time. Kairos is not measured by the accumulation
of minutes, but by the “rightness” of a moment. It is a frequency shift: moving
from a life lived for the next milestone to one lived for the morning light of
the kitchen table or the depth of a single conversation. In this state, time is
no longer a resource to be spent, but a medium in which to dwell.”
“If the long middle offers a silver lining, it is the brutal
sharpening of one’s discernment. It leaves only the essential, revealing that
meaning resides entirely in the quality of our attention. To walk through a
park, to watch the sunlight catch a river or to register the laughter of
children against the thrum of a passing bus is to realise these are no longer
background noise; they are the destination.”
“Living with stage four lung cancer has taught me that
strength is not a metric of productivity or a narrative of 'recovery'. It is
found instead in staying present within a life that no longer fits the frantic
success stories we are sold. In a culture that fetishises the loud 'bounce-back', choosing to live gently, attentively and on one’s own terms is
an act of quiet defiance. The long middle is not a waiting room, nor a preamble
to a finish line; it is a demanding, vibrant and profoundly human place to be
alive.”
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