After the Bell Rings: Survivorship in the Shadow of Cancer

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After the bell rings: Survivorship in the shadow of cancer

When I rang the bell the first time, I felt like a pied piper. An exuberant conga-line of oncology nurses and even an acupuncturist followed as I departed the infusion center for the last time, gathering in a private area for the brief ceremony. A plaque hung on the wall where I read the inscription out loud before giving the bell a hefty shake. Surrounded by applause and laughter, glee exploded in my chest like a cloud of confetti. This being the day before Thanksgiving, I arrived loaded with pumpkin cookies for the nurses and spent my final infusion high on gratitude.  I had successfully completed 16 rounds of chemo, something I had doubted my ability to manage when it began six months before.

Bell-ringing makes a powerful statement; a crucial stage of cancer treatment has reached completion. The ceremony remains controversial because some patients, particularly those with metastatic cancer, may never finish treatment and are denied the pleasure of a commemorative moment.  I rang the bell after completing radiation for both diagnoses but refused the ceremony when I finished chemo a second time.  I’d had to do more rounds of chemo than initially anticipated and didn’t want to jinx myself by rejoicing too soon.

Completing trimodal treatment (chemo, surgery, and radiation) for Inflammatory Breast Cancer (IBC) delivered both excitement and relief.  Like an adolescent celebrating an 18th birthday, I experienced the intoxicating anticipation of freedom.  No more daily trips to the hospital or toxic pharmaceuticals routinely dispensed through my chemo port.  No medical providers informing me of all the things I couldn’t do and monitoring my every move.  My immune system would finally begin to recover from the assault and I could return to a work schedule not continually disrupted by medical appointments. 

And yet, as when that same adolescent realizes that adulting contains an element of rock-hard fear, I felt apprehensive when my oncologist discharged me from active treatment.  Although regular check-ups, daily anti-estrogen medication and occasional scans waited in the wings, I was launched into an uncertain future and expected to return to some version of normal life. 

Upon completing treatment for my first cancer diagnosis, I expected I would “get my life back.” Months passed before it sank in that my pre-cancer life could not be fully recovered.  Treatment side-effects persisted and some, like neuropathy in my feet or lymphedema in my arms, may last a lifetime.  My body had proven susceptible to life-threatening illness but had also demonstrated a fierce will to survive.  On the offensive in the wake of serious illness, my mind had occasionally deteriorated into a battlefield where thoughts careened out of control, dragging emotions across an internal landscape littered with trip wires and explosives.  My hopes and expectations for the future were re-shaped in ways I never could have anticipated before diagnosis.  Sometimes I looked in the mirror and didn’t recognize myself.  Perhaps it was due to my stubby hair, worn long my entire adult life and slowly regrowing after baldness, or maybe my spirit had also transformed. Who was I in this new, post-cancer life?

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Ringing the bell after chemo in 2017
Beyond the joy and freedom delivered by treatment’s conclusion, the abyss awaits. It may seem counterintuitive, but for most cancer patients anxiety and fear escalate in the weeks and months following the completion of treatment.  While we are on chemo or radiation, or awaiting surgery, there is a comfort in knowing that something is being done to beat back the disease.  Now, we sit and wait.  But for what exactly?  We have entered the phase termed “survivorship,” which most find difficult to navigate.  A friend captured its essence when she commented, “the silence of survivorship is loud ” and compared the aftermath of treatment to abruptly standing still after running a marathon.
 
Anyone who has experienced cancer fears recurrence.  Without continual supervision and intense therapy regimens, we feel vulnerable.  Our oncology providers appropriately shift their focus to other patients in need of active intervention, stranding us on the sidelines. It is common to feel abandoned by providers, and even family and friends, who stood by us through many challenging months and who now anticipate a flourishing recovery, if not an entirely new lease on life.
 
In the realm of survivorship, any discomfort generates alarm.  A stalker by nature, cancer lurks like the monster under the stairwell waiting for a quiet moment to strike.  We survivors remain on high alert; soldiers on patrol defending against a potential enemy within.  Normal aches and pains that once escaped notice now loom like storm clouds on the horizon, threatening metastasis.  An unusual ache in my lower back, a headache, or even a mild cough may herald the beginning of the end.  Not everything is cancer but for me, it was.  Twice.  It doesn’t take much to hit the fast-forward button into a worst-case scenario.
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Ringing the bell with my radiation team, 2018
Many of my fellow Stage III survivors request scans to refute fears of recurrence and to prove that wellness has taken root and will hold.  For those who are not in the metastatic (Stage 4) arena, regular scans are not considered beneficial and may even be harmful because of exposure to radiation.  No scanner can detect a single tumor cell, and most machines lack the specificity needed to discover cancer until it is simultaneously causing symptoms.  For that reason, scans are not often part of a health maintenance routine.  My situation is different due to the risks involved in a highly unusual second case of IBC. I am continually assessed for symptoms of metastasis such as shortness of breath, headaches, or bone pain, and undergo quarterly CT scans of my chest and abdomen.  
 
Like many other survivors, I adopted the “three-day rule,” during which I resolved not to panic about symptoms unless they lasted more than three days in a row. This provides a buffer while rolling with the normal ebb and flow of routine health challenges.  Even an allergy-generated headache tends not to last three days, and the common cold is the most likely explanation for a cough.
 
One Saturday, some months after finishing radiation a second time, I was unusually exhausted and spent a good chunk of the day reading on the couch. Two friends in their 70s were both busy with yard work and home repairs.  Having recently turned 57, I felt like a slug. Why the fatigue? Anxiety nibbled in the background.  I reminded myself that I’d been working a lot and maybe it all caught up with me.  Perhaps it was the oral chemo I take twice a day, but I’d been on it a few months already.  Hardly able to keep my eyes open, I caved and made a second cup of coffee in the afternoon while my mind settled in a dark place.  Lethargy is one of the early indications of a malignant cell division process that would harness my energy for nefarious purposes.  It might mean . . . THAT.  The fatigue dissipated soon afterward but not before depositing a trail of wreckage in my psyche.  Perhaps rest was what my body most needed but the accompanying inner turmoil made relaxing nearly impossible.
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From Surviving to Thriving: My 52nd and 53rd birthdays
Conversely, if symptoms persist, I promised myself that I would not dismiss them.  Despite the best intentions, I have discovered that when I am in the exam room, I become foggy and have trouble verbalizing concerns. I suddenly “forget” what has bothered me for days or convince myself that it is inconsequential.  Why not wait until the next appointment, which is a month away, and mention it then?  I have had to figuratively slap myself awake and remind myself that I committed to speaking up.  With a keen awareness of the risk of recurrence, there is no justification for disregarding a persistent symptom.
 
After promising myself that I would inform the team about a lingering cough, I felt the cloud descend when I arrived for an oncology appointment. I calculated that I could make it through an entire appointment without coughing, thereby not calling any attention to a concerning symptom.  Although I quickly realized the absurdity of my thought process, I still had to force myself to notify the tech who took my vitals because I might lose my nerve if I waited for the oncologist to arrive.  Sure enough, an x-ray appointment appeared on my schedule within 30 minutes and was followed by a CT scan a week later.  This time, the surveillance bought reassurance, with no indications of metastasis to my lungs.
 
Like many other survivors, I worry that I will run out of time, despite racing to outsmart malevolent cells conspiring to bring about my downfall.  I exist with a heightened awareness of death’s ability to strike without warning and the potential for pain and debilitating treatments over which I have precious little control.  Being overly conscious of its possible end makes it difficult to enjoy life in the moment, while being fully in the moment means not continually contemplating the final chapter.
Ringing the bell with my radiation team, 2021
In our online support group, women often inquire about survival rates but I don’t care to speculate. Survival data represents a generalization that fails to capture the complexities of any given cancer scenario (estrogen positive versus triple negative, invasive lobular versus invasive ductal, complete response to chemo versus positive nodes after surgery etc). Research advances, science changes, treatment adjusts.  Some patients receive better quality treatment than others.  Some of us will get lucky and some will not.  Data about survival adds nothing of value to my day-to-day experience.  Death will come for all of us at some point and, while I don’t deny that reality, I do my best to keep my mind in check and focus on the splendid experience of being alive.
 
The truth is that cancer has taught me a heck of a lot about living.  Life is often hard but beauty abounds, creating daily opportunities for gratitude and joy.  Although I fear recurrence, I don’t hang out there.  In the wake of illness, the mundane becomes a source of delight; the turbulent rush of getting ready for work in the morning, taking out the trash (and having it reliably picked up!), or unloading a dishwasher that is magically full of gleaming glassware.  “Thrilling” is not a word I used to describe cleaning the refrigerator until I undertook the task the night before I started chemo.  For me, survivorship is less a bucket list and more a playlist. Thank you, cancer, for lighting the way toward what truly matters.  Having survived your onslaught twice, I see you.  And I see clearly that these are the good ol’ days.
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A pair of Clares completing radiation
One of my favorite songs from the chemo playlist:
Good Old Days (excerpt)
Macklemore, featuring Kesha
 
Never thought we’d get old, maybe we’re still young
Maybe we always look back and think it was better than it was
Maybe these are the moments
Maybe I’ve been missing what it’s about
Been scared of the future, thinking about the past
While missing out on now
We’ve come so far, I guess I’m proud
And I ain’t worried about the wrinkles around my smile
I’ve got some scars, I’ve been around, 
I’ve felt some pain, I’ve seen some things, 
but I’m here now
Those good old days
You don’t know, what you’ve got
Till it goes, till it’s gone
You don’t know, what you’ve got
Till it goes, till it’s gone
Songwriters: Andrew Joslyn / Ben Haggerty / Joshua Karp / Kesha Sebert / Samuel Wishkoski / Tyler W Andrews
Good Old Days lyrics © Warner Chappell Music, Inc
“Life will break you. Nobody can protect you from that, and living alone won’t either, for solitude will also break you with its yearning. You have to love. You have to feel. It is the reason you are here on earth. You are here to risk your heart. You are here to be swallowed up. And when it happens that you are broken, or betrayed, or left, or hurt, or death brushes near, let yourself sit by an apple tree and listen to the apples falling all around you in heaps, wasting their sweetness.
Tell yourself you tasted as many as you could.”
Louise Erdrich, The Painted Drum

12 thoughts on “After the Bell Rings: Survivorship in the Shadow of Cancer”

  1. CLAREY!! Wonderful piece. So many things I could relate to. I find comfort in reading your posts because I know I’m never alone or crazy lol!! Cancer in a weird, twisted way was a blessing for me. As you mentioned it allowed me to see and see clearly!! Thank you so much!! Congratulations on today’s milestone!!!

  2. The Louise Erdich quote is perfect. Your analogies are so good. I have observed your fogginess in the exam room! I love the photos you included here. You are so beautiful.

  3. It is so inspiring. Love that song also!
    I have so many favorites parts, one of them is “being fully in the moment won’t let you contemplate the final chapter” Beautiful! .

  4. Oh Clare…I so appreciate you sharing your thoughts. Having felt inundated the last 4 years with cancer language every day since my second cancer diagnosis..I felt a need to fill my mind with other good thoughts. And I admit I can only read some of your thoughts and will read them all as I can. Ongoing cancer can expose our vulnerable body to other lurking illnesses, and I’ve had to work on training my brain to stop constantly looking for them and getting past the ones that do invade me. I also work at finding something good in each day..each hour…and you are a warrior in helping me and so many others do this! Thank you Clare and here’s to living our best💞 Becky

  5. I finished radiation for IBC just a week ago and I feel this blog post to my core!!! You wrote all the things I’ve been thinking and it made me feel like I’m not alone. Thank you!

    1. Hello Christy and fellow IBC Survivor – thank you so much for your comments. My hope is that in sharing our experiences, other survivors won’t feel alone. Best wishes to you as you begin the next chapter of this journey. Thank you again!

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