Part I
The Destructive and Creative Potential of Disrupters
Chapter 1
Membership in a Club I Donāt Want to Join
A Surreal Phone Call
Iāve walked the familiar school halls for nineteen years since switching careers in 2000, but this time itās different: surreal, focused, insular. Itās 2:27 p.m. as I head to my last class full of spirited high school sophomores and juniors. At 2:14 p.m. I just answered a call from the gynecologist with the results of four needle biopsies to learn that three of them reveal hard-to-detect lobular carcinoma. I have breast cancer once again, but itās a different kind this time, a stealthier, more deadly kind. My first cancer was invasive ductal carcinoma with some lobular features. This time itās all lobular. The doctor tries to reassure me that its non-aggressive nature will probably only require excisions. (How wrong that would be!) The phone call ends ten minutes later, and I try to collect myself. What should I do, go to class or find a sub? Since thereās no time to find a sub before my 2:30 class, I stand up, straighten my clothes and my resolve, and head out the teacher core room into the bustling hallway. I feel detached, like being in someone elseās body.
Walking down the hall as I have done thousands of times, I think this is the strangest out-of-body walk Iāve ever had. I appear to blend into the routine, but my life is flipped over in an instant. I wonder about students who experience similar feelings of alienation in the hallway. I push down the door handle of the classroom and the news I just heard and enter the room. A memory from seventeen years ago flashes through my mind of defiantly pushing down the door handle of the Tarzana Hospital where I am about to have my first breast biopsy in 2002, feeling certain that this is a waste of the doctorās time. Those were the former days of invincibility. That biopsy and subsequent surgeries and treatments initiated me into the cancer club. Todayās door opening shows less of that early certainty, but itās not completely gone. Is it the myth of being special? Why do I still believe that bad things donāt happen to me? Teaching that class is a robotic blur; Iām in charge, but not really; I operate by instinct, and I canāt report later what we discussed.
After school, I take a moment for reality to settle in as I tell a colleague, and friend, the news. She reflects on her own dissociation after losing her college-age son a few years ago. She tells me that her grief the first year was so ever-present and palpable that she simply went through the motions of teaching. She could not report the specifics of her teaching, only that she somehow got through that year. We bond over a shared experience of loss and detachment.
Thereās little time to make crucial decisions. A single or double mastectomy? What kind of reconstruction and when? The plastic surgeon advises against an implant on the affected side due to previous radiation, which significantly lowers the chances of success. An alternative is to do a microscopic tissue transplant from the abdomen to the breast called a DIEP flap surgery and an implant on the right side. Cold and rushed decision-making diverts the flood of emotions into a neighboring tributary.
This diversion continues for a time as I decide how much information to share with the students, tie up loose ends, and prepare to leave two weeks before the end of the school yearāand my teaching career as my retirement plans are already made before the diagnosisāamid final oral presentations and exams. I choose to be candid with my students, spurred by Joniās Eareckson Tadaās comment of not wanting to waste her breast cancer recurrence. I want them to know how my faith helps me.
The support and loveāhugs, prayers, meals, gifts, cardsāaffirm my choice. A sixteen-year-old student named Ryan even leaves a gift basket with candles, a floral English teacup, and tea on my doorstep along with a hand-written note. Iām moved because it looks like he, not his mom, authored this kind act.
Wanting to finish well, I push myself until six the evening before surgery, as students patiently stand in line for hours to complete missing assignments. Why do they always wait to the end? At this point I take up my colleaguesā offers to grade extra work. With dizzying speed, my career ends at the school I helped found almost twenty years earlier. For now, the dizzying speed is a comfort, the comfort of agency and control.
Like many disrupters, cancer initiates me into a club I donāt want to join. After my first initiation in 2002, I clicked the unsubscribe button as soon as possible. In the first few months after that experience, I still thought about cancer every day; then, slowly, the months and years of remission carved a wide stream out of the tributary into a normal life. Years of floating on the calmer waters carried me far away from the rocks and snarls of that small tributary. Normal was the new fantastic for me.
But here I am again, and this time it feels like Iām heading down the rapids toward a precipice. Itās like a bad dream of returning to a place you think youāre far removed from to find the same fears and anxieties again, only more pronounced, like being back in middle school with the bullies. In your dream, you ask yourself if itās just a dream, but it doesnāt seem to be because the dream continues. āHow did I get here?ā I ask myself incredulously.
When I Find Myself in the One to Two Percent of Medical Statistics
I never expect to find myself in the one to two percent of medical statistics. In my first consultation with the plastic and oncological surgeons, I automatically dismiss the low percentage of failure. Under discussion is what to do after the double mastectomy (DMX). My options for reconstruction are limited. I decide on an implant on the right and a DIEP flap transplant on the left, a lengthy and specialized microsurgery transplant of abdominal tissue to the breast.
I automatically dismiss the low percentage of failureāit never enters my mind. Itās a habit I haveāor hadāof denial. After all, my birthday is 7/11, a lucky number, right? Mixed in is the conflation of denial with strength and the feeling of being special. Deep motives are not pretty things. Iām thankful for the privilege of having excellent medical opportunities at my disposal. I calculate that prominent surgeons supported by sterling educations, a teaching position at UCLA medical school, cutting-edge experience, strong reputations, and good bedside manners thrown in as an extra, suffice to beat the odds.
A digression, why are they called ābedside mannersā because one only discovers them after surgery? So, Iāll call it patient rapport to be distinguished from the pedantry and intimidation of the old days where the patient obediently submits and doesnāt ask too many questions. The plastic surgeon may belong to an older generation, but he is approachable, dedicated, and funny. He makes time to meet us right away for over an hour extending into the evening. The oncological surgeon is educated at Harvard with a quiet, reassuring kindness and compassion. A woman of few words, she uses touch to show she cares. My hematologistās forty-something bedside manners make me chuckle when he introduces himself: āHi, Iām Shayā (instead of a long Persian name), listens to my story without taking notesāhis NP does thatāand offers a high five at the end of the appointment. Between appointments I can email him, and he gets right back to me. I like his style.
On the day of surgery, I expect to be under anesthesia between six and eight hours, but it turns out to be a celebrated five and a half hours followed by an upbeat report of how my being in shape helps the surgeons finish the radical bilateral mastectomy and DIEP flap transplant in a short amount of time. Whose pride doesnāt swell at hearing the efficacy of working out and being in shape? I buy the line that I can control my health. We rest confidently on the positive report from two medical experts.
I recall blurry snippets of the night after my surgery in the ICU. Around one in the morning a machine starts beeping loudly. Why is it going off? A young nurse comes in to silence the beep, making what strikes me as an inexperiencedāactually, off-the-wallāassessment of the cause, but she canāt silence it. I keep trying to figure out what she means but canāt make sense of it. The ICU nurse assigned to me enters with calm professionalism and kindness. She is one of those special nurses who studies her patients to figure out what they need. As it turns out, she would be assigned to me three days in a row, and I would see her at a wedding of a friend two months later. The beep still wonāt stop. She checks the portable Doppler ultrasound device for blood flow to the transplant site, but the signal is mixed and uncertain. As additional nurse staff flit in and out, I hear them mention the surgeonsā names and āemergency surgery.ā Thereās talk of blood clots, blood thinner, scary prospects. Eight hours before, the report was crisply positive, the Doppler showing steady blood flow, but now the danger is rapidly spiraling.
A couple of hours later, the staff tries to call my husband, Rick, to inform him of an emergency surgery, but his phone is off because itās the middle of the night. They finally reach my oldest son, Andrew, who lives an hour away. The quick and efficient movements of nurses prepping a patient for surgery fill the room with hushed and rustling noises. I lie in bed, my mind dulled by anesthesia, narcotics, and confusion and my anxiety spiking.
All I know is that I am alone and afraid of facing an emergency surgery in the middle of the night. The most vivid memory of that night is the ceiling in the hallway as the nursing staff wheels me to the operating room. Time stands still as I move under its bright lights. A mental picture downloads with surprising clarity and precision. Snippets of a familiar passage appear like a screen shot to my drugged brainālucid, unbidden, and irresistibly sweet.
The words of the psalmist which my friend Pam texted me a day before take center stage in my mind, sliding fear to the periphery: