Worse Than a Cancer Diagnosis
Read the prequel, "April Fool's Day" HERE
We had just come in from a walk outside when my family doctor called to give me the biopsy results. Last week I’d had a life-altering mammogram after which a sympathetic radiologist had given me a book on how to parent with cancer. We’d been waiting for this call. Mark and I locked eyes and wordlessly acknowledged the plan. You take the kids. I’ll take the call. I love you. I ducked into the kids’ playroom and closed the door, which caused my three-year-old son, Eli, to howl for me.
“I didn’t want you to have to wait,” my doctor had said, a note of urgency in her voice. “You have invasive ductal carcinoma with regional metastasis to the axillary lymph nodes.” It was breast cancer which had spread to the lymph nodes in my armpit. I couldn’t even pronounce my diagnosis.
“I thought it was a cyst. There was a cyst there – you said it was a cyst.”
I’d had an ultrasound in late 2017. My family doctor had reassuringly pulled up the ultrasound again in 2018 when I’d mentioned it hadn’t gone away.
“I didn’t tell you wrongly. It was a cyst. There is no evidence of the cyst anymore.”
Cancer was now in the exact spot where I had grown used to a cyst. How unlucky.
“How bad is it?” was all I had left to ask.
“I really don’t know. You’ll need more tests to determine that.”
I wasn’t satisfied.
“Please… I have little kids,” I implored her, as if the mere mention of children would grant me access to classified information about my breasts. “I need to know …if I’m going to live or die. Can you just… just give me a human answer?”
I was squatting in the corner of the playroom next to Eli’s train set. Mark was trying to wrangle the kids while they cried for me on the other side of the door; Eli’s wails of “I want Mama!” added a soundtrack of anguish the moment so demanded. My doctor hesitated, then took a breath and said:
“I’ve seen it go both ways. Women with your diagnosis… some do all the treatment and it’s gone; others, it comes back and…”
She let the implication finish her sentence.
“A lot depends on your CT scans to see if it has spread. They’re going to scan your brain, chest, abdomen and bones. You’ll have your answers in about two weeks, I would say.”
Two weeks. Impossible. I’ll die of a heart attack just waiting.
Fear of spread quickly usurped my fear of cancer. I didn’t yet know that I was living the notoriously brutal period between diagnosis and treatment, where the scope of uncertainty was eclipsing the world of normalcy we once knew. The normalcy we once took for granted. Test results aren’t in yet. The treatment plan is unknown. Moreover, in our case, standard cancer care is replaced by Covid cancer provisions. Suddenly and unexpectedly being dragged into this cancer world is more akin to a learning cliff than a learning curve, a particularly daunting undertaking for the newly baptized at a time when stress and anxiety levels are waging full-body wars.
Am I going to die? Am I dying? My mind raced day and night.
In the absence of biopsy and CT scan results, no doctor could give me a clear answer. Of course they couldn’t. The medical realm relies on evidence to formulate prognoses. As desperate as I was to hear “Don’t worry, you can beat this,” or “Everything is going to be okay,” I quickly learned that I wouldn’t find any blind cheerleaders here - in this new world of cancer. Rather, the dead-end responses to my questions always introduced new questions and jargon that I needed to search on Google. In turn, Google offered that I was dying of many things, including cancer.
“For some women, it hasn’t spread beyond the lymph nodes,” the radiologist had said that first day following the mammogram. Her response introduced me to the lymph node calamity: cancer is in the lymph nodes when it is more advanced and on the move. Spread is on the horizon if breast cancer has already reached (as mine had) the lymph nodes in the armpit: the last line of defense in the body. Apparently this put me in a particularly vulnerable category of cancer. The Big Leagues, I now call it. The radiologist’s measured response had also highlighted that spread is a charged word in this cancer world; it is seen as a game-changer, a delineation between two things. But what? Hope and hopelessness? Beating or being beaten? Life and death?
When we finally met with our oncological surgeon over video chat (because the pandemic put a stop to most in-person appointments), she clarified the meaning of spread. She told us:
“Stage 3 breast cancer is curable,” and typed “curable” into the Power Point slide she was projecting on the computer screen in front of us, below the hypothetical “Stage III”. The words sat cozily in between the two digital circles that represented my breasts.
Stage 3 was our best case scenario. It’s what I would have if there was no spread.
“If the cancer has metastasized beyond the lymph nodes, you have Stage 4 breast cancer, which is not curable. The CT scans will tell us if there’s been metastasis.”
I was still waiting to get booked for the scans.
“What is my prognosis with Stage 3 Breast Cancer?” I read from my list of questions Google had told us to ask.
“Stage 3 is curable;” she repeated, evading the statistics trap, “Stage 4 is not.”
Our learning cliff had such a sheer drop that in a mere week-and-a-half, we’d gone from happy duo to a couple who was hoping and praying for Stage 3 breast cancer. Metastasis - spread- became the new nightmare scenario.
I called the hospital to ask if I could fill in any last minute cancellations so I could get in for my CT scans sooner. The uncertainty was oppressive; I was being smothered with an invisible boulder while doing every day tasks, like trying to make a batch of cookies with my three-year-old. The surgeon’s words swirled in my head: Stage 4 is not curable. Stage 4 is not curable. I was teetering at the precipice of an unfathomable abyss, a few scans away from knowing whether I might safely step back, or plummet to my -
“Mama, spiders eat flies.” And then Eli would be there. “Mama, do spiders eat flies? Mama!”
“Hmmm? … Yes. They do. Here, Eli. Lick the spoon.”
Google searches yielded results that turned me into a hypochondriac. Any ache or pain could be a sign of metastasis, as could fatigue. Jaundice was a sign of spread to the liver, so when a reading lamp I had placed in our dimly lit bathroom cast a yellow pallor over my skin each morning, I would dash out of the bathroom, heart in my throat, to inspect my skin and the whites of my eyes in a better light. At last, one particularly merciful Google search revealed that the symptoms of metastasis are identical to all the symptoms of acute stress.
By Wednesday of week 3, I had finished my scans; I had gone to three different hospitals for 3 separate tests and was told that I would have my results back within a week. My next call would be an introductory phone call with my oncologist on Friday morning. I was looking forward to it because she was going to walk me through chemotherapy which I was desperate to start because every day without treatment might be the day the cancer spread.
“Hi Crysta, I’m Dr. S. Nice to meet you.” We exchanged pleasantries for about 15 seconds, the slight lapse in her speech betraying that she was distracted by something else.
“I’m just… pulling up your file here. So I see here that your CT scan results are in,” she announced.
Oh my God. I sat cross-legged on my bed, frozen. My eardrums tautened. The silence in the room changed.
Oh my God. This is it. This? This moment? I peeked into the abyss.
“Your brain scan is fine… Liver and abdomen… all clear.”
Liver is clear!! I’m in the clear!
“Now… hmmm…”
Oh my God. I swallowed a ball of condensed air.
“Your chest scan is showing…” she paused.
SAY SOMETHING
“Ummmmm – let’s see here,” she half whispered to herself the way people do when they’re multitasking on the phone. “The chest scan results are indeterminate.”
To be Continued.
Read Part 2 HERE