When I spoke with my palliative care physician about a referral to a mental health professional, my doc said they knew just the person.
A little scene-setting never hurts: The palliative care offices are tucked neatly between Senior Care and Optometry on the sixth floor, overlooking a commons area between the county hospital where I receive services and the children’s hospital across the green space.
The towering glass facade of Eskenazi reflects the city back onto itself on the near-West side of downtown. The reflected cement and steel city outside these futuristic, ten stories of tinted glass signals the bold proclamation that all deserve access to the best care in the best possible setting.
Checking in for appointments at the front desk greeting visitors as they step, roll, or shuffle from the “green elevators,” I am asked, “Optometry?” “Palliative care,” I reply. I am handed the clipboard and directed to door D. I glance while I walk to see “Senior Care” in narrow, sans serif font mounted in sharp black text on the clean, white walls. Diagnosed at 34 years old for a disease with a median age of diagnosis of 64, sitting in the Senior Care waiting area brings a grin to my face.
A few questions into the anxiety questionnaire, I snort with laughter. The GAD-7 asks the survey respondent to circle the number corresponding to the prompt: “Feeling afraid as if something awful might happen,” ranging from “Not at all” to “Nearly every day.”
Something awful might happen? Something awful did happen! I have fucking terminal cancer!
“Most people with cancer feel like something awful might happen, so we take that into account when scoring,” my mental health professional reported back while I took at least half of our first session to provide the Director’s cut commentary to my anxiety and depression questionnaire reponses. In fact, whether I always want to hear it or not, telling me just how unremarkable I am seems to be my psychologist’s prime directive! I mean that both to be funny and serious. I benefit from a kind but firm level-setting that reminds me while we each are unique snowflakes, there are only three phases of H2-0.
So that there isn’t a question: While my surgeon and oncologist have kept me alive, it’s this clinician who offers healing.
Afraid that something awful might happen is the lens through which many of us cancer patients probably see the world. It’s the attitude that I’ve adopted, or at least adapted to having. If not fear, acknowledgement that something awful might happen. This feels like a necessary awareness. It’s floating around somewhere with the scanxiety we feel before routine MRI scans, like my last one on August 22, 2022.
You have an awareness like this, too. You love to tell us cancer patients about it: “I could get hit by a bus tomorrow!” I.e., “I fear something awful might happen.” Of course, that’s not really the same. The bus metaphor is wholly unhelpful. It centers you in the attempt to comfort me. It projects your awareness of life’s uncertainty onto my very real certainty of facing an existential threat. If we were at the arcade playing Frogger you may say, “I could get hit by a bus!” I’d say, “Me too!” But when you’re talking to me about the bus, what you mean to express is that my unexpected and serious diagnosis has given you reason to reflect on the precious nature of life, and you should probably just say that. No bus needed.
My recent scan was stable.
It’s taken me this damn long to tell anybody that news outside of my close circle. And don’t get me wrong, it’s good news! So why then has it been so tough for me to let it out? Whitney and I posted our usual MRI selfie. The scan went according to protocol. I met with my oncologist. What’s the big deal about throwing up a quick Facebook post, appreciating the likes, in turn, liking the comments, and we can all move on with our lives?
The difficulty with me telling you the news of my stable scan is grounded in this: We can all move on with our lives. In fact, the harshest (but most liberating) lesson that each cancer patient must learn, bigger than that, the lesson taught to all when we have the good sense to pay close attention to our mortality is that brutal and freeing truth: Life moves on.
The liberation comes through acceptance that our friends, family, jobs, soccer clubs, and microbreweries don’t depend on us for their survival, hell, even for their success and joy. That all are sad in our passing is expected. The liberation comes when we choose to be passionate and powerful in the present moment because with or without us, life moves on. When we accept that, and I mean truly get it deep in our bones, we strive for a just world that liberates all to be passionate and powerful in their present lives and speak against those who would deny others this power. True power uplifts.
But the acknowledgment; the fear. We become paralyzed. We put off sharing otherwise good news.
In the gratitude of good news is the fear that something awful may be coming to spoil it. We begin to mitigate our due joy for fear of it slipping through our grasp. We mute our celebration and measure our smiles. We’ve dropped enough jaws at medical conferences and waiting rooms with our long survival that we dare not tempt death with loud applause.
Feeling as if something awful may happen.
The could-be has robbed us of the is. The possible is a thief of the present. This has all been hard to see, but thankfully, I’m neatly tucked in between Senior Care and Optometry.
13 responses to “The Thief of the Present”
Wonderful news upon your last scan. I have been praying and rooting for you.
Thank you for sharing your deepest thoughts. My 19 year old son had GBM. I find that there’s humor in what you write very similar to my son. You are a very brave man that is walking through this life knowing that you have his fucking fatal disease. Keep walking because you are surrounded by people that love you and want you forever with them on this earth. May you find some comfort with this. ♥️
You’re hilarious and serious all in one 🙂
I am a radiation oncologist in Canada who treat patients with GBMs. I started following your blog about a year ago. They are always thought provoking but I want to thank you for todays post especially. Your perspectives help me to think about the best way to serve my patients, and in particular today it has made me think more about the exact language I use. I agree that having this job does make me consider my own mortality and allows me “to be passionate and powerful in the present moment”, but I am most grateful for your reminder to not centre myself in that narrative. I believe that is sometimes a coping mechanisms for oncologists, so your reminder is appreciated. Thank you for continuing to share your experiences.
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So glad to hear about a stable scan, and to read your words, as always— you really do have a way with them.
Hit by them,
waiting for them
I am always struck,
By the power
And the absurdity
And as that
What about this
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I am grateful for your wisdom and guidance, and for that stable scan.
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Your words have truly touched my heart. Our family has walked the road you are on and your words are so true. I will share your words and wisdom with friends and love ones, to live and love in the moments God has given us. Thank so much for sharing your heartfelt words. Love and prayers to you and your family.
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Sharon, there is no greater compliment than to hear that my words touched the heart of another family who has walked this difficult path. All and only good thoughts to you.
Every single post you make, I feel like checking our house for listening devices – no I’m not paranoid, but you are always echoing my thoughts and our discussions in this household. Sometimes you manage to say in words what I have not been able to elucidate, despite many attempts. For two years my stable scans have elicited a “phew” and a get on with life feeling – though the slow decline back into “what if next time..” starts pretty quickly in my head. The impending scans really are a thief of the present. Such a great term. May I re-use it – with credit, of course. I “only” have an inoperable oligo (not the dreaded GBM) but my most recent scans (until the August one) found my mindset less “lets get on with it” and much more – now I feel I’m getting closer and closer to a scan which inevitably must not be stable. Slight shift in emphasis. And then my August scan showed signs of progression and I’m back on the “what can we throw at this now?”. Your wisdom around something might happen and the bus analogy also resonates with me. Do those not awaiting the inevitable “we can’t do anymore” proclamation watch obsessively every bus that they see or hear. Do they lay awake at night worrying about buses? It’s a ridiculous analogy and as you rightly say tries to make this about them. Inspired by you, I also generally post a gown clad insta post at my scan, followed in days by “its stable”. But this time for some reason I didn’t. I’m not saying I instinctively knew something wasn’t right, but more from the perspective that I feel telling everyone it’s stable feels like I’m giving my friends and family permission to move on – and I resent not being able to do so myself – because for me the climb back up to the next scan starts (albeit gently) the very next day. Its hard to avoid – I get a phone call from the scanning facility to organise my next scan, followed by letters confirming my next appointment for the MRI and oncology, all within days of the result. Continue to go well, your way with words helps me enormously.
You are a brilliant thinker, writer and connector. This community is so lucky to have you.
Terrific outcome with the scan!!
I love your reference to the proverbial bus… I was hoping someone would just drive it off a cliff.
Recently I revisited the Noom website and was heartened to see you there!! Keep up the living, my friend.
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