Spread - Part 2 of 2
Read Part 1 HERE
Friday, April 17
I’m not breathing. My oncologist who’s on the phone and was supposed to be prepping me for upcoming chemotherapy just announced that my CT chest scan results came back indeterminate. I don’t know what this means. Indeterminate. Did some intern spill coffee on it? “Why indeterminate? What does that mean?” “Well, let’s see here. It reads you have several small pulmonary nodules, one in the left lower lobe and a few in the right lung. There are some enlarged mediastinal nodes as well, one about 9mm in width.”
She speaks and the words disappear before I can write them down. I feel stupid, asking her to repeat herself multiple times, but her disembodied voice and the metallic taste of panic delay my processing.
“Normally, I have patients in my office,” she sympathizes, “and I can show them exactly what I am seeing on the scans,” reminding me that she and I are both clambering through new territory: me – cancer; her- Covid. “So these.. the nodes… or nodules? …are they cancer?” My question is clumsy. “Well, it could mean nothing, or it could mean that the cancer has metastasized to your chest.” Death sentence… Nope. Not me. Not us. “What are the chances of that?”
“I would say there’s a 50% chance. I reel. That’s one in two. A fateful coin toss. Wake up. Wake up. Wake up from this hellish nightmare.
I can feel myself slipping, a fog enshrouding me, my shoulders buzzing with hot tension, so I channel Mark.
“What’s next?” he would ask.
Dr. S is thinking out loud. She’s just seen the scans, so she doesn’t yet have a cohesive plan for me, but she’s trying.
She starts giving me options, but I’m having trouble following. Each follow-up test will take weeks to schedule. Maybe we delay chemo and start hormone therapy. A biopsy may not be physically possible. A bronchoscopy isn’t offered during Covid. Something about a PET scan being our best bet.
“The problem with a PET scan,” she explains, “is that it’s only covered by OHIP under specific circumstances. You might qualify for one now, but I would have submit paperwork for it to be approved. It might take weeks.”
It would delay treatment. No time.
I desperately need to turn “indeterminate” into “all clear,” and to start chemo.
She says more, and the information is all muddled, but I get her to summarize our conversation with: “What do I tell my husband?”
“Tell him the chest scan came back indeterminate. There are some nodules, and an enlarged lymph node in your mediastinum. I am going to bring your scan to rounds on Tuesday to discuss it with the respirologists. Then I’ll have a better sense of what we’re seeing and what our options are.”
Tuesday is four days away but it might as well be next year.
I’ll never survive the anticipation.
We hang up. I can hear Mark in baby/toddler mayhem downstairs. By the time I join him in the kitchen, the kids are eating a snack.
“How’d it go?” He asks, his eyes on the dishes he’s unloading from the dishwasher.
“Um. The scans came back,” I say weakly.
Mark stops moving and looks at me.
“The chest scan – Eli, put that down! Here, give me that,” I take a large fork out of Eli’s hand so he can run without a weapon. “The chest scan came back indeterminate.”
We lock eyes, briefly, then: “Eli! Do not pour your water on the cat!”
I try to explain what Dr. S told me – all the options – all the possibilities and complications while Eli’s behaviour becomes like a pantomime of our stressful conversation, and Mavi screeches that she’s done from her high chair. I show Mark my notes. My sad, incomplete notes.
My mom, who had jumped on a plane from Calgary before I could say “I have can-” is nearly finished her 14-day self-isolation at a nearby Airbnb. I’ll have to deliver this indeterminate news to her from 6 feet away. I later tell her the bullet-form version:
I need to start treatment ASAP.
I need follow-up tests to find out what is in my chest.
Some follow-up tests are not available because of Covid.
Further testing will delay treatment, or else chemo will confound test results, and we’ll not have any more clarity.
I might be dying of cancer.
* * *
Thursday, April 23 It’s Thursday, almost one week after the conversation with my oncologist. Tuesday rounds yielded little clarity. The respirologists agree with my oncologist that the chest node and nodule conundrum could be nothing, or could be everything.
My mom’s self-isolation period ended and she moved in with us this week, offering Mark and I a much-needed reprieve from the kids when we need to step out of the room to take calls, do research or stare out a window in a cold sweat, wondering how we got here.
Today, Mum and I are driving to Montreal to a private PET Scan clinic. My family decided to foot the bill for a private scan so I could get in before tomorrow, Friday, when chemotherapy starts.
Win-win. I get the follow-up scan and I get to start treatment on time.
If the nodes and nodules in my chest light up in the PET, the cancer has most likely metastasized. If they don’t, it most likely hasn’t. The PET isn’t 100% definitive, but it’s the most accessible and accurate option we have right now. And I can start chemotherapy knowing what is in my chest.
The drive is 2 hours, the PET scan, 3. After much discussion, we’ve decided that Mark will stay home with the kids and Mum will accompany me to Montreal. My mom almost didn’t come because it means she has to sit in the car in a parking lot the whole time.
Thank God for Mom. I don’t have to brave this one alone.
“You can’t bring anyone inside,” the receptionist at the PET scan clinic had told me over the phone.
“I know,” I sighed. It’s been the case since this Covid Cancer thing started. No plus one. Not to appointments, scans, chemo; nada.
“Can my mom at least come in to use the bathroom? She’s 66.” This was currently the dilemma we were facing. How was my mom expected to last 7 hours without a pee?
“No, unfortunately, she can’t.”
Ruthless, but I get it.
My surgeon’s words from two weeks ago had conjured up bleak imagery: “Your job is to NOT get sick. Not a cold, not a gastro issue, nothing. You need to get all your treatments, and get them on time. You can’t afford any delay. DO NOT get sick, do you understand?”
HA! During a pandemic.
We use Google Maps to locate a public bathroom where she can pee, and we bring lots of masks and sanitizer. We have an official medical document for the police in case I get pulled over for my Ontario plates. Quebec has temporarily shut its borders to control Covid outbreaks.
When we arrive, Mum stays in the car with her phone and tablet, a blanket and some snacks. She and I text while I’m in the clinic. Later, when the scan is over and I return to the car, she tells me we had parked in the drug-dealing corner of the parking lot.
“Why didn’t you tell me? Or move the car?!” I balk.
“I didn’t want to worry you. Or them.”
Oh, Mom. We can’t stop laughing.
We drive home after the scan and I feel shaky relief. I’m starving because I’ve had to fast all day, but now I’m paranoid that I haven’t properly sterilized the steering wheel and gear shift, and I’ll be cross-contaminating my recently sanitized hands.
“I’ll eat when I get home,” I tell my mom, who’s offering me cashews.
It has been a rollercoaster week, but we’d managed to solve this confounding dilemma and find a clinic that would book me in for a PET scan just in the nick of time.
“You know, I feel this relief,” I tell Mum once we’re out of the city and on the highway home. “There’s nothing more we can do.”
We get home and determine that I can be near the kids because Google agreed that the radiation exposure from the scan has likely worn away and I’m no longer a toxic threat to them. Tired and crampy from all the fasting and the pre-scan barium, I get the kids to bed, take a shower and wash and then blow dry my hair for the last time.
“Are you sure you want to do this tonight?” My mom asks, almost pleadingly.
“Oh yeah.” It has to be tonight.
I walk into the bathroom and look at my reflection.
Don’t make a big deal of this. It’s just hair.
When I leave the bathroom, my hair, once hitting my back, is gone, only about 1cm remaining on my head.
“I’ve heard it’s traumatic to lose big clumps of hair in the shower,” I explain to Mom and Mark one last time. “And it will be less jarring for the kids when I do go bald.”
Mark thinks I look cute.
Thank God for Mark.
* * *
Friday, April 24 – Chemo Day 1:05pm It’s almost time. I have to be at the hospital for a 1:30pm chemo appointment. I’ve heard this treatment, Adriamycin followed by Cyclophosphamide, is nauseating. I’ve heard I will come home weak and sick. I was already at the hospital this morning getting my bloodwork done. I have been screened over the phone and in person for Covid symptoms, as has been the case every time I have to enter the hospital. I have the pills my oncologist prescribed. There’s a syringe in the fridge that I have to inject myself with tomorrow night and 24 hours after each of my subsequent chemo treatments. I’m already nauseous with anticipation, but I try to breathe. I’ve read about limbic resonance, and how our stress can be absorbed, by osmosis, by the kids (which I’ve witnessed first-hand, countless times over the past month).
“The PET scan results should be ready within 24 hours,” the technician had told me yesterday at about this time.
I’m in the kitchen amidst the hustle and bustle of the kids’ post-lunch chaos. Eli has been excused from the table, and Mavi is playing on the floor with a whisk when my phone rings. The last 4 digits mean it’s the hospital calling.
“Mark, it’s them. PET scan?” is all I can say as I hit the bright green phone symbol on my screen.
"Hello?” I’m fumbling to put my phone on speaker.
“Hi, Crysta? It’s Dr. S.”
My mom is by the sink. She’s stopped what she’s doing and stares at us. Mark moves closer to me, holding his phone face up in the palm of his hand, recording the conversation.
Say the PET scan is all clear. Say it. The PET scan is all clear.
The PET scan is all clear. The PET scan is all clear.
“I’m calling because the results of your PET scan came in? The PET scan from yesterday which was done in the Montreal center to check if the CT scan nodules were…” she continues to describe the reasons for the PET scan ad nauseum and, through eye contact alone, Mark and I scream in unison “JUST TELL US THE FUCKING RESULTS!”
She finishes her lengthy intro and there’s a pause.
I’m holding my breath.
The PET scan is all clear. Say the PET scan is all clear.
“If I only have Stage 3,” I had told my cancer coach a few days ago, “I feel like I’ve beaten cancer.” I knew this was an absurd statement, but no more absurd than me – ME – having stage 4 cancer.
There’s no way.
Dr. S resumes.
… … The name of my fate is “Unfortunately…” I don’t need to hear any more. We’ve lost. I’m lost.
Wake up, wake up, wake up.
With surprising muscle control, I gingerly lower my body, which has completely detached from me, to the kitchen chair behind me. Mark remains standing, his phone face up alongside my phone.
My eyes find my mom, pale, standing across the room. She is perfectly motionless, but I feel her falling backwards. The invisible thread that connects us slackens a little, like she’s forgotten to hold on for a minute.
Dr. S is still talking. Every word she utters sounds like “Unfortunately…” Her voice is coming in and out.
“So the lymph node in the chest area – they are looking like they are positive – meaning the uptake has increased. So the overall findings –there’s the chest lymph nodes around the heart and they have the same distribution as what we see on the chest CT scan. With the PET scan- The lymph node we’re looking at from the chest area around the mediastinum, the FDG activity does look like it’s elevated. It’s only a degree of elevation. Above a certain degree we say these are positive FDG activity.”
Miraculously, I find a question: “Is there any chance that the PET scan is wrong? Are these findings definitive?”
“I think realistically these lymph nodes are concerning and a higher likelihood that they are cancer related. … If we’re really not thinking long-term cure, some patients don’t want the chemo because they want to avoid chemo toxicity. But, we have talked about what the plan was – we could do chemo or we could do hormone therapy. I think we should still do chemo.” This must be atonement. You’re going to die. Mavi … Eli. …No cure. How stupid I am. To think that I would get to be a mother and wife…. Mark. …Wake up. Wake up. Wake up. …Death. …This is a nightmare. I will end. I am ending. …Mavi. …Eli.
She’s moved on to talking about my treatment plan, for Stage IV, as different images from my babies' short lives swarm my mind.
“I know your chemotherapy starts soon. I just wanted to catch you before you left so you can confirm that you think this is the right course of treatment before we proceed.”
The clock says 1:15pm. Chemo is at 1:30pm.
“Okay,” I say, tearlessly.
Now Mark and I are in the car, driving down an empty stretch of road towards the hospital. We must have hung up with Dr. S and left the house. I’m staring straight ahead. I’ve lost the ability to blink. My chest is full of fiery heat.
Mark’s talking, but he’s coming in and out.
“Baby, we can beat this. We can’t give up. There’s research. There are clinical trials. Listen to me. We can’t give up hope. This isn’t it, okay? There’s a lot we can do. This isn’t the end. You can still beat this.”
Now we’re parked in front of the hospital.
“I love you so much, Crysta,” Mark says.
I’m standing on the footstep floor decal that distances people in line for screening in the Main entrance of the hospital.
Did I tell Mark I love him too?
“Hi there.” It’s my turn to get screened.
“Do you have any new or worsening cough or sore throat?” asks the person across a long table, their face obscured behind a mask and protective visor.
What does it fucking matter.
The heat in my chest reaches all the way into my shoulders.
“Any diarrhea, constipation?”
Just a touch of fatal metastases.
“Have you been out of the country in the last 14 days?”
Lady, I’m in another solar system right now.
Now I’m walking out of the elevator, which I still had the sense to ride alone. There’s a reception desk. In a chemo ward? I don’t know what I was expecting. The heat in my shoulders rises into my throat. I see the red tape demarcating a box in front of reception. Don’t stand in here. It reminds us. The man in front of me steps into it anyway. He speaks through plexiglass.
The heat rises into my cheeks. Metastasizes into my head. My vision is foggy.
The man is gone now and it’s my turn. The receptionist is looking at me.
“I’m Crysta Balis. I …”
The heat that’s been building up in my head is overwhelming. It’s swelling behind my face, pinkening my cheeks, burning my ears and stinging my eyes. It wants to brim over and has no where to go. When I open my mouth to speak, it’s like I’ve opened an escape hatch and it pours out, in my words, in tears, and suddenly I’m fumbling to explain myself from behind a hot mask.
So many tears. Don’t touch your face.
“I… just found out like 10 minute ago that my cancer has metastasized. Can I.. Can I go somewhere? I just need a minute.”
When will I ever feel justified to cry without embarrassment?
“Um,” she stands up. Directs me to an empty cluster of seats on the opposite side of the elevator.
I find it and sit down. Double over. Cry. Breathe. Stifle sobs.
What a public mess.
The receptionist sits in a chair 6 feet away.
“I have babies,” is how I explain my despair.
“Oh. That must be hard.”
I go silent. But then a thought comes, and with it, another eruption of heat and sobs and finally I can articulate what’s worse to me than death; I’m not sure why I’m unleashing this on a stranger, but I am:
“Like…” I sob, “I’m going to be this sick mom who just DIES ON THEM!”
Bingo. The bowels of my dilemma.
I don’t look at the receptionist, but she is still there.
“You know,” she says, and I think she’s going to tell me I have a fighting chance. Instead, her words are: “Kids are resilient.”
This reduces me into a full-body, cry-heaving, sobbing mess as I picture Eli and Mavi, motherless, learning resilience. Them without me. Me without them.
Was I ever really a mother if my kids don’t know me?
The candour of her reply remains one of the most sobering proclamations since diagnosis day. I so desperately wanted her to tell me that it would be okay, and she couldn’t, so she didn’t. Instead, this stranger gave me space in that cluster of chairs to mourn the loss of everything I thought I had in the bag. A future I was sure about. A life of motherhood. I cried until the heat was gone. A couple minutes? Maybe longer. And her coddle-free approach oddly soothed me, because deep down I know her words, about kids being resilient, are honest, and that she opted to honour the reality of my situation instead of steering me away from it with some placating remark that would only delay this confrontation between me and this Stage IV beast. She – in her chemo-ward wisdom – must have known I couldn’t delay such a confrontation any longer.
After mourning here, on this ugly beige chair, the loud crescendo of emotions has fallen silent, and I know I’ve shed a layer of something. Gained something.
And now there are no more tears, and I’m bolstered. There have been – will continue to be – a lot more of these intense moments where I fall, descend, nestle into anti-bullshit truth. But I’ve just learned that once I can make eye contact with the horned, cancerous beast, I can also learn it.
Learn from it. Fear it less. Opt to run with it – not from it.
I look up at her, ready.
“I’m sorry. And thank you so much,” I tell her. I’m solid now.
“Oh sweetie. It’s nothing. Trust me. I’ve seen it all, working here.”
And then numbness sweeps over me. Perhaps it’s the anti nausea meds kicking in. They double as anti-psychotics, and I revel in their sweet, burden-free, dulling effects.
Hello glass-of-wine feeling. I’ve missed you.
“You’re in Pod 5,” the receptionist tells me when we’re back at the desk. I walk down the chemo corridor, towards my uncertain future, to my pod, my bed, my IV, my new normal, and I get my first chemotherapy infusion.
* * *
An odd calmness lingers days later, even after I stop taking the anti-nausea meds. Hope has kicked in and taken over, and not a naïve hope, either. A hope that embraces the harshness of “Unfortunately” and of “resilient (motherless) kids”. Something from within reassures me that everything is going to work out. Mom and Mark are encouraged by my hopefulness, and I tell them and all my family and friends to start planning for an epic boat party, when I’ve been in remission for 5 years. I’ll wear a white dress with a light blue jean jacket. The boat will hold everyone and sail the Ottawa River while we dance and eat and drink and the kids run around and make mischief.
The hope and the despair sometimes dance together as we learn to walk around with uncertainty, but I’m alive now, like really alive.
“Besides, they’ll have a Nanobot cure in five years”, I always say.
Right now all I need is more time.