APPENDICURE · LIVING IN THE IN-BETWEEN · PART 4 OF 5
The Misunderstood Reality of “Luck” in Cancer
When I speak openly about my experiences, I often feel dismissed. Even among the medical and cancer communities, I have been told I was “lucky,” as if having a rare disease that requires constant monitoring is a gift. They tell me “it could be worse.”
They don’t see that Active Surveillance is a treatment plan. It’s not doing nothing. Every scan, every lab test, every follow-up is part of fighting this disease. Every test, every wait, every moment of uncertainty – it is treatment. And yet people act as if I am “cured,” as if the waiting, the fear, the scanxiety doesn’t matter.
There is no cure for this. Stage 4 cancer is part of my life now.
Living in the Cycle of Waiting
I’m constantly waiting. Waiting to see if or when it comes back….a recurrence. There are no answers, only questions and endless uncertainty.
Every three months the cycle repeats itself. Some people think testing should happen at longer intervals. For me, that would not be an option. I would imagine tumor cells and mucin growing in my abdomen. I would scrutinize every ounce of increased weight the scale shouts in my haggard face.
When “Lucky” Is the Wrong Word
The first words I remember the surgeon saying after my Stage 4 diagnosis were, “You’re so lucky it wasn’t ovarian cancer as we thought.” My primary care physician echoed the same words, as did nearly every nurse in the hospital after my horrific surgery.
It’s appropriately called CRS – Cytoreduction Surgery, or my personal favorite: MOAS – Mother of All Surgeries.
Any wonder why their words fail to give me comfort or hope? They make me angry as hell.
Explaining a Cancer Few People Have Heard Of
Then there are those blissfully unaware people who have never heard of appendix cancer. They ask, “Is that a thing?” and look at me suspiciously as if I just made it up.
Others say, “You had appendicitis?”
No, moron. I have cancer.
The Weight of Insensitive Comments
Perhaps the most infuriating exchange was with the office manager at my primary care physician’s office. I was there days after my hospital discharge…hair filthy, disheveled, wearing my husband’s shorts and T-shirt.
She congratulated me on my weight loss.
I replied that I had a turkey-sized tumor, a TAH-BSO, appendectomy, copious amounts of mucin, and a sigmoid polyp removed.
Her flippant response:
“Whatever gets it done! You look great!”
She was fortunate I was so weak—and that my husband grabbed my arm—because I was ready…
My Lifelong Relationship With Luck
Let me tell you about my lifelong experience with luck.
If it weren’t for bad luck, I would have no luck at all.
You know that phrase “the luck of the Irish”? It actually began in the 19th century as a sarcastic remark implying Irish immigrants succeeded only through sheer luck – not skill or intelligence.
That pretty much describes me.
I’ve never won a prize, raffle, or lottery in my life. I’ve often joked that the only lottery I could win would be the Death Lottery, getting drafted into military service, or the Hunger Games.
What Active Surveillance Really Means
“You’re lucky you don’t need chemo or radiation.”
I understand this one. I’ve watched dear friends suffer through the torturous side effects of chemotherapy, only to lose the battle.
But I am under treatment.
People understand the phrase under construction as a warning. Yet they don’t apply the same logic to under active surveillance.
In society, surveillance means systematic observation – stakeouts, wiretapping, espionage, GPS tracking. Crime movies and intelligence agencies.
In cancer, surveillance is treated like a footnote at the end of the story, after everyone else has tuned out.
Everyone except the patient, who remains vigilant – counting the days, hours, and minutes until…
The Exhaustion of Platitudes
Then come the endless platitudes and clichés. The empty words make me nauseous.
People, including those close to me, verbally vomit rehearsed phrases that lack meaning. They say them in misguided attempts to offer comfort or avoid difficult conversations.
These comments feel dismissive, condescending, and devoid of empathy.
My most dreaded ones:
- “You don’t look sick.”
- “Everything happens for a reason.”
- “What doesn’t kill you makes you stronger.”
- “Thoughts and prayers.”
- “There’s always a lesson to be learned.”
- “Just have faith. Trust in God.”
- “Think positive thoughts.”
- “You’re a warrior.”
To these I want to scream: “FU!”
The Silence That Follows
If I react with anger, despair, or tears, some clueless fool immediately offers the phone number for the hotline…you know which one.
Please forgive me if I choose not to engage.
There are countless days with no texts, no calls, no FaceTimes….no contact with the outside world. Not because I want isolation, but because I don’t feel lucky and I cannot accept hollow words.
So I stay quiet. Alone.
Silence becomes my enemy in this very personal war against ignorance.
The Loneliness of Being “Lucky”
I’m supposed to be an advocate for the voiceless.
When did I become part of that group?
It makes me wonder:
Is loneliness the biggest price of being “lucky” in cancer?
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