No. 41 | Not all questions have easy answers
A life-changing diagnosis sparks a search for answers.
“So, what’s your book about?”
It’s not the first time I’ve been asked this. As far as questions go, this is one of the easy ones.
But it’s the first time I’ve been asked while lying topless, face down on a kind of hydraulic hospital bed or full-body length exam table raised to shoulder height, my left breast dangling through a circular opening in the middle, between two metal plates that grip my flesh like a vise and beam X-rays to a nearby screen.
So please excuse me if this time, the answer takes a moment to give.
Trying to keep the rest of my body as still as possible, I turn my head towards the source of the question: a nurse with dark fringe, blue eyes, and soft lines etched around a smiling mouth. “Call me J_____,” she says, supplying a Dutch name, “or Jess. Is Jess easier?”
Cheerful, seasoned and efficient, Nurse J lays her blue-gloved hands on the cold flesh of my bare back. Her touch warms and calms me.
This is just like getting a Brazilian, I tell myself as the metal plates flatten my flesh. They ask you questions to distract you from the pain.
The progression is familiar by now. What do you do — a writer, what do you write — a book, how exciting — what is your book about?
Nurse J’s blue eyes widen when I give her the standard line. It’s a well-practiced answer to an easy question and flows right out of me. After all, I’ve been telling people for nearly four years that I am writing a book about being in an open marriage. It comes up everywhere, all the time: on dating apps, at a book club, in conversation with friends, among strangers.
The book feels inextricable from who I am now, melded into my identity, which is maybe not the healthiest of relationships. After all, I can’t make this book my whole personality. Or have I already, and is it too late?
Behind me, on the other side of the room, radiologist-in-training W. (youthful face, cornsilk ponytail, barely-there glasses) is busy with the mammogram images. The sounds of her shuffling and activity stop for a beat. I can tell I have her attention. It’s like I have eyes in the back of my head.
Surely this is above and beyond the call of duty. My debut is a year away from publication, yet here I am half-naked and supine, waiting for a radiologist to slide a stainless-steel needle into my breast, doing freaking book promotion during a stereotactic biopsy. And I can’t help it.
More questions come; I don’t mind. I mean, what else have I got to do around here? Chatter might relax me. Every muscle in my body is tense, on high alert and primed for resistance against the imminent invasion of an unseen enemy.
So I answer Nurse J.’s questions. The satisfaction of her curiosity is the least I can give in return for the kindness of her touch.
Yes, I live with my husband.
No, the man in the waiting room is my boyfriend.
My daughter is sick today, and my husband had to stay home with her.
Yes, they know each other.
Yes, they’ve been taking turns bringing me to these appointments.
Yes, I’m a very lucky woman.
If nurse and trainee are the opening act, the male radiologist is the rockstar, appearing at the last second. The stage is set with local anesthesia, so I feel nothing when he launches into his performance, sliding a hollow needle into my breast and turning it clockwise. Once they have filled five miniscule chambers filled with cells from my body, both needle and doctor make a smooth exit.
I’m a very lucky woman.
Nurse J. explains that these chambers now contain some of the microscopic calcifications scattered throughout my breast, which will be sent to a pathologist for examination. The micro-calcifications look no bigger than white pinpricks, even when magnified onscreen. They appear so insignificant that I feel foolish for going through all this trouble for these tiny specks.
I’m a very lucky woman.
The biopsy takes 30 minutes, including 15 minutes of compression—10 by the machine, five minutes by hand—to stanch the bleeding from the puncture. When it is over, Trainee W. makes two cups of coffee for me and my boyfriend, who is finally allowed into the room. “Get ready, he’s going to have a billion questions,” I warn Nurse J, who pretends to hide behind the exam table.
I sit up to sip my coffee; the bed is lowered so I can hop off. After I am dressed, Trainee W grabs a notepad. “Wait, what’s the title of your book?” she asks. “Is it in English or in Dutch?” I give her both. Ask Me How It Works; Vraag Maar Hoe Het Werkt.
“Is it really only available next year? Can I not pre-order it now? Why does it take so long?” she asks. My boyfriend and I exchange glances. Oh, if I had a Euro for every time someone asked me that question.
“Set a reminder on your phone,” he quips. “March 2025. One year from now.”
“Oh, I will!” W says, and we all laugh.
Before leaving, I thank Nurse J. “You are an angel,” I tell her. She seems surprised. Then, with a smile, she says, “So are you.”
I pause, combing my mind for any questions I might have. There are none.
The questions come later. During the first call.
Answers filter to me as if from a distance. Precursor. Breast cancer. Recommend removal. 12mm. Breast-saving surgery. Closer look. Another mammogram. This afternoon.
I obey immediately, willing my body to yield the answers the specialists need for their group consultation. Here in the Netherlands, consensus is a national value; they will decide on next steps together. In a daze, I hop on the tram across town to another hospital, where there is no laughing Nurse J. This second mammogram is done in minutes.
I disintegrate when I reach home.
The second call comes two days later (Happy International Women’s Day!).
I have more questions; they have longer answers.
Yes, the precursor has a name. DCIS—ductal carcinoma in situ.
Atypical cells located in the milk ducts. They usually remain there instead of metastasizing, into surrounding tissue or into the bloodstream. Among younger women, sometimes it is better can just wait and see; because of my age, surgery is recommended. I wonder: am I young? Am I old?
Later I find other answers online, on my own: Early. Non-invasive. Responsible for about 20 percent of breast cancers.
Yes, an MRI is necessary. To determine if there is anything else; to define the exact size and area before surgery. Yes, they can prescribe medication for my claustrophobia.
No, it would be better to discuss the MRI results in person than over the phone. Yes, they insist. Yes, they can schedule an appointment on Friday morning, so I can be home when my daughter comes home from school on her 11th birthday.
During the MRI, I close my eyes and pretend the machine sounds are techno beats on a dance floor. I am so sedated I fall asleep for the last four minutes. Thought he Oxazepam has stripped me of my entire personality for 6 to 10 hours, this is a relief. I take it to mean I am neither anxious nor neurotic enough for benzos.
The first appointment with Dr. R (Botticelli oval face, gentle brown eyes) gives me answers. But they are not the ones I hoped for.
The MRI has revealed more of the DCIS—the pre-cancer, also known as Stage 0 breast cancer—than the 1,2cm area first found in the mammogram. It is more twice than as large as they thought—5cm. Within this area is another revelation: a new lesion of 1,6cm.
She cannot answer any questions about what this untested lesion might be. Another biopsy is scheduled for the following week. After that, we will know more: what it is, what it responds to, how fast it might be growing. We cannot discuss my options until we know more.
But now the questions are relentless, hammering inside my mind for release. So I ask. And ask some more.
Even when Dr. R’s expression grows guarded. Even when she cautions, this is already a lot to absorb. Even after she says, we should stop here.
Words leak out onto the table between us, a mess I cannot clean up. Chemotherapy, radiation, hormones. Drip, drip, drip.
“So, if surgery is definitely recommended,” I say slowly, pulling mental levers like an addict at a slot machine, “and the area is now bigger than you expected, then is a breast-conserving surgery still an option?
For a heartbeat she hesitates. I wonder if she regrets being duty-bound to answer this question. When she replies, her answer is circumspect. “No,” she says, “because of the size of the area, a breast-conserving surgery would no longer be an option.”
For a brief, absurd moment, I am proud of myself for figuring out the one question that elicits a definite response. For reading between the lines of her answer. It is only when I grasp what I stand to lose, that I curse my own curiosity.
Because now I am in over my head, overwhelmed by all the answers I asked for, yet drowning in all the answers I do not have.
“I think I’ve hit my limit,” I say, barely able to form the words.
The appointment ends.
Walking out into the early spring sunshine on my husband’s arm, I barely register the sun’s warmth or his presence. I escape to an impregnable within, somewhere deeper than all the questions — why, why me, why now, what did I do, what will happen now, why, why, why — where no answers can reach me.
This draft has been sitting in a folder for nearly three months.
March was shutdown: the freeze response of shock, resistance and denial. April was paralysing fear: an insatiable hunger for both reassurance and distraction, a flight response. I wish I could say that this month has brought acceptance. But that would make me look better than I am and stronger than I really feel.
Instead, the gift of May has been agency. Choice. Action. You might call it a fight response, but I don’t want to see my body—or what has been found in my body—as the enemy. Corny as it sounds, I’m a lover, not a fighter.
Since I was diagnosed with DCIS, I’ve had more medical appointments than I can count, and devoured more medical journals than I can keep track of. But I still don’t have all the answers. Instead I’ve had to accept that I can never really know everything.
To move from paralysis into action, I have had to trust myself and the people around me enough to forge forward into the unknown, which means choosing the least shitty option from an array of shitty options. Instead of railing against the shitty options I’ve been presented, I choose to recognize that even having options is a privilege.
Many women who have faced this crisis have had treatment thrust upon them. Because I believe that agency is power, I have to believe that being able to choose my own treatment pathway according to what is most important to me, is a gift, even if the path I’ve chosen is neither the easiest nor the shortest.
In June I will undergo a lateral mastectomy, followed by a delayed reconstruction that will use tissue from my abdomen, rather than a silicone implant, to replace my left breast. Making this choice was surprisingly quick, a clear, sharp gut instinct; accepting it is the struggle. How this choice will unfold in my day-to-day life and how it will reshape me is unknown. I must learn to accept that, too.
All I know—that I remind myself of daily since my diagnosis—is that I have a home, a loving family, a wonderful boyfriend, amazing friends, an abundance of support and love. I have an income, a career, a future, a book coming out in March, a dream-come-true unfolding right before me, and an incredible team behind me. I have the best people around me that I can trust to hold me when I need to fall apart. I’m neither ill nor fighting for survival—my body is still capable of what it did yesterday, and the day before that.
All I know is that I wake up each day and I’m alive. Not just living, but fully alive.
These are the answers to my heart’s unspoken questions.
These are all the answers I need, for now.
Here in Amsterdam, purple thistles and yellow buttercups dip their heads towards me as I pedal down sunny paths on my bicycle.
The full-on lushness of spring as it peaks into summer inspires me to live as much as I can, in spite of it all. For life always finds a way to spring up between the cracks.
As always, I love hearing from you. Ask me anything, and I’ll do my best to answer—whether in an email, comment, or my next letter.
Maybe go easy on me —I’ve had quite enough of the tough questions for now.
Just read this. I am really sorry. You approach life with such courage and bravery, and I really hope this carries you onwards, forwards, with the same energy. But I am sending you much much love and all the strongest and best vibes for you and your body XXXX
Sending you love and and whatever healing energy I might be able to send. Thank you for sharing this and you with us <3