An essay written from inside the nowhere land — before the diagnosis, before the answers, before I knew how the story ended — for anyone else standing in the doorway of something they did not choose.
by Ditas Katague
There is a particular kind of nowhere land that arrives when you have received news that will change everything — but the everything hasn’t changed yet.
You know what’s coming. You just don’t know exactly when, or how, or what you will look like on the other side of it. You are standing in the doorway of a story you did not write, holding the doorknob, deciding whether to walk through it publicly.
To begin. Or not to begin a cancer journey? That is the question.
I am a woman who writes about grief. I have a blog — Grieving Thru Glee — where I have learned that the act of naming the hardest things is itself a kind of survival. Words have always been how I find my way back to myself.
So when I received news that sat down in my chest like a stone and didn’t move — I knew eventually I would write about it. The question was whether to write it in real time. In the unknowing. In the nowhere land, before I have answers, before I have a surgery date, before I know what chapter comes next.
I decided yes. Because someone else is sitting in their own nowhere land right now. And maybe they need to know they are not alone in the doorway.
So here I am. Beginning.
—
I pushed publish on Thursday, April 16th.
Just eleven days after my car was T-boned and totaled.
I was still bruised up and hurting. Couldn’t do much yoga. Couldn’t do Pilates. Couldn’t even walk Leif the way we both needed. If you have never had an airbag deploy on you — it is blunt force trauma to your sternum. In my case my left arm took most of the impact, and the seatbelt left deep bruises across my lower abdomen and across my right breast.
I was hurting in ways I could see and in ways I was still discovering.
But I hit publish anyway. Because the essay was ready even if my body wasn’t. (If you haven’t read “Episode 1: Worthy of Being Seen, fourteen years of grief, searching for joy, and learning to belong to myself” here’s the link: https://www.grievingthruglee.com/blog/grievingthruglee14years
A few days later the chest pains started on my left side. I assumed it was tenderness from the airbag. Residual bruising. The kind of thing that gets worse before it gets better.
I had a video appointment with a One Medical nurse practitioner. Told her about the accident. Told her about the chest pains. She didn’t hesitate.
Go to the ER, she said. Or urgent care. Get an EKG. Now.
I thought — okay. Probably nothing. Probably just the hematoma I suspected in my chest cavity from the airbag. Get the EKG, confirm nothing cardiac is happening, go home.
I went to the ER.
And that is where everything changed.
—
I drove myself to the ER.
In my brand new EV — just purchased to replace the car that had been totaled eleven days earlier. There is something almost absurd about that detail. New car. Same ER. Different reason.
The first time I had come here, the ambulance brought me. They did a chest X-ray. Checked my arm and hand. Found no broken bones. Sent me home.
This time I walked in on my own. Chest pains. Some history of heart issues. They did an EKG first. Inconclusive. Sent me back to the waiting room.
Then came the blood draw.
And while I sat there waiting — I noticed something. Pokey stabs in my left breast and below my left rib cage. Not the dull ache of bruising. Not the soreness from the seatbelt. Something more specific than that. An inside-poking-out kind of feeling. Like the gallstones I’d had before. Definitely something interior. Something that did not belong to the accident.
Something else.
So they decided to do a CT scan with contrast. They put in an IV — my veins are not great, so that was its own small adventure — and then they slid me into the machine.
The CT scan took four minutes.
Four minutes.
I have thought about that a lot since. This powerful, life-altering imaging technology. Four minutes. I find myself wondering why we don’t all just get these scans done routinely. What else is sitting quietly in someone’s body right now, waiting to be seen, that four minutes could find?
What was sitting in mine — had apparently been sitting there for a while. I just didn’t know it yet.
—
I waited.
The attending ER physician came in — a lovely woman with a calm, steady presence.
She said: well, your scans don’t show anything concerning with your heart or lungs.
But.
They found a mass on the tail — the distal end — of your pancreas. It’s not small. It’s 31mm. We’ve already called the oncologist, and they should be calling you tomorrow morning.
I want you to sit with that for a moment. Because I had to.
I came in for chest pains I thought were from an airbag. I drove myself to the ER in my brand new car. I was annoyed about my veins and the IV. I was thinking about getting home to my dog.
And in four minutes, everything changed.
The car accident sent me to the ER. The chest pains sent me to imaging. The imaging found something that had nothing to do with any of it — something that had likely been growing quietly for months, maybe years, waiting to be seen.
Every detour was the path.
—
I sat there in that ER room, stunned.
Trying to wrap my head around what I had just heard. Mass on my pancreas. The tail. Caught early. Oncologist referral.
I texted two friends who had been keeping tabs on me during the ER visit — just in case someone needed to drive over and let poor Leif out to pee. Leif, my eight-year-old border collie, who had no idea his person was sitting in a hospital room with the ground shifting beneath her.
They were just as shocked as I was.
One of them had just lost her mother to Stage 4 Pancreatic Adenocarcinoma. Last December. They hadn’t discovered it until she was severely jaundiced and collapsed in the shower. By then it had grown at the head of the pancreas and wrapped itself around vital organs, veins, arteries.
There was nothing to be done.
She knew this path. She knew it from the worst possible angle.
I typed the words to her anyway. Because she was the person I thought of. Because she would understand in a way that required no translation.
I gathered my discharge papers. Walked out into the night. Got into my brand new car that still smelled like new car — the car that existed only because eleven days ago my other car had been destroyed — and I sat for a moment before starting the engine.
What does this mean?
I didn’t have an answer. I just drove home to Leif.
—
I woke up the next morning to my cell phone ringing.
John Muir Oncology. Calling to set up a consultation. It was Friday. They got me in for Monday at 2pm.
I texted my aunt.
She is a retired oncology nurse from Stanford, where she worked alongside Dr. George Fisher — the oncologist who had cared for my late husband at the Stanford Cancer Center. She is our family’s go-to when the scary, impossible things arrive. She has been in the hardest rooms. She knows how they work. She knows what the language means and what the silences mean and what questions to ask before anyone else thinks to ask them.
Her first advice was practical and urgent.
Check your insurance before that Monday appointment. Make sure the oncologist you are about to see is in-network. One out-of-network visit. One out-of-network test. It could cost a fortune.
I have CalPERS Blue Shield Platinum Plus PPO. Good insurance. Great insurance, actually. The kind you feel grateful for in the abstract — until a moment like this one, when abstract becomes very, very specific.
And yet — why would an ER refer me somewhere out of network?
Apparently it happens.
—
I called Blue Shield.
I gave them the name. Dr. Watson. The oncologist John Muir had already referred me to. The appointment already scheduled for Monday at 2pm.
The woman who answered checked. Not in network.
I asked her to check again. Not in network.
I asked her to triple check. Not in network.
And then the panic started to set in. Not the first panic — that one was already there, had been there since the night before, sitting in my chest alongside the bruises from the seatbelt and the airbag and the accident that started all of this.
This was a different panic. The kind that sits right on top of the other panic. The cancer panic. And now immediately above it — the insurance panic. The this-could-cost-me-everything panic.
I had just been told I had a 31mm mass on my pancreas.
I had great insurance. Genuinely great insurance. The kind I had paid into for years, the kind I had been quietly grateful for in the abstract way you are grateful for things you hope you never need.
And now I was being told that the doctor they had already referred me to — the one whose name was already in my phone, whose appointment was already in my calendar — might not be covered.
That the referral machine had done what referral machines do. Connected me to whoever was available. Not whoever was in network. Not whoever my insurance had agreed to pay for.
Just — whoever.
And now I was standing in the middle of two simultaneous emergencies. A potential cancer diagnosis. And a healthcare system that was asking me to navigate its fine print while I was still trying to breathe and to try and contain what could be spiraling healthcare costs.
I did not collapse. I made another call.
—
It was Saturday.
Every office was closed. There was nothing more I could do about Dr. Watson until Monday. The insurance calls were done for the day. The referral problem would have to wait. The cancer — whatever it was, whatever it meant — would have to wait too.
So I did what I could do.
I called Blue Shield to reestablish care with a Primary Care Physician in Sacramento. Because in seven days I was moving back home — back to my house in East Sacramento after seven months of living out of a suitcase. Seven months of housesitting and driving across the country with Leif and all my belongings sitting in a storage pod waiting for me to come back and claim them.
I needed a doctor in my corner. In my own city. Someone who knew me, or would get to know me, on the other side of whatever this was going to be.
They reassigned me to the doctor I’d had five years earlier. Dr. Cureall.
I know. You cannot make that up.
And he really is — a genuinely wonderful physician with a genuinely perfect name for the moment the universe decided to assign him to me.
I hung up the phone and sat with that for a moment. Dr. Cureall.
In the middle of the worst weekend of my life — navigating a potential cancer diagnosis and a healthcare system that doesn’t check whether its referrals are in network and a storage pod full of my belongings and a dog who needed walking and a house I wasn’t yet living in — the universe handed me a doctor named Cureall.
I did not have answers. I did not have a diagnosis. I did not have clarity about what Monday would bring or what the weeks after Monday would bring or what any of this meant for the life I had been in the middle of rebuilding.
But I had found my footing. One phone call at a time.
That is the nowhere land. Not the dramatic moments. The Saturday in between. The offices closed. The calls you can still make. The small anchors you find when the big ones aren’t available yet.
Monday morning, I had to cancel the John Muir oncology appointment.
The Blue Shield call had made that clear — Dr. Watson was not in network, and I was not walking into a consultation that could cost me everything on top of everything else I was already carrying.
So I made a different call.
UC Davis. Sacramento. My city. My insurance network. My next move.
They got me in at 11:20am with Dr. Cureall.
Leif and I drove to Sacramento together — because that is how we do things, this border collie and I, we go places together — and I dropped him at Auntie Alana’s. He trotted inside without looking back, completely unbothered, absolutely certain that his person would return.
I drove to the appointment alone.
Dr. Cureall was everything his name promised. Calm. Thorough. Genuinely good. He looked at my scans. He listened. He put the referrals to oncology in as urgent — the word I had been told to use, the word that moves things faster in a system designed to move slowly.
And then I asked him — because I had been doing my research, because that is how I handle fear, because I was not going to leave that office without having done everything I could do that day:
Can I do bloodwork today? The lab is right across the hall.
He said yes.
I asked for a specific panel. CA 19-9. CEA. CA-125. Lipase. The markers that would begin to tell a story about what this mass might or might not be.
I walked across the hall. I gave more blood. And then I drove back to Auntie Alana’s, picked up Leif, and we drove back to Benicia together.
The results came later that day. April 20th.
Normal. All normal.
CA 19-9 — normal. CEA — normal. CA-125 — normal. Lipase — normal.
I sat with that for a moment. Normal.
And then I sat with the thing that normal could not fix.
There was still a 31mm mass on the tail of my pancreas. The labs were reassuring. They were not answers. They were not a diagnosis. They were not the word I was waiting for.
__
The fight for the oncology referral began the moment I left Dr. Cureall’s office.
Urgent referral submitted. Lab work done. Everything I could do that day — done.
Now I just had to wait for the system to move.
They told me even with an urgent referral, it could take three to five days.
So I waited three days.
And then I called oncology.
Sorry. We don’t have your paperwork.
I called the next day.
Sorry. We don’t have your paperwork.
I called the day after that.
Sorry. We don’t have your paperwork.
I want you to understand what those phone calls felt like. Not the words — the words were polite enough. But the experience of calling, day after day, with a potential cancer diagnosis sitting in your chest, being told that the paperwork that was supposed to move urgently through a system designed for exactly this kind of urgency — had not moved at all.
That nobody knew where it was.
That nobody seemed particularly concerned that nobody knew where it was.
I finally reached the patient advocate.
I told her what I was going through. That I had a 31mm mass on my pancreas. That my doctor had submitted an urgent referral. That I had been calling for days and could not get any information about where that referral was or when I would have an appointment.
She listened.
And then she said: Well, the process for urgent referrals takes three to five days. And we’re still within that time period.
Click.
I sat there holding the phone. Still within the time period.
This is the part of the cancer journey nobody tells you about. Not the diagnosis. Not the fear. Not the scans or the labs or the waiting rooms.
The clicking.
The being told you are still within the time period while you are sitting in the nowhere land wondering what is growing inside you and whether anyone is going to help you find out before it is too late.
I put the phone down. And then I made another call.
—
I thought — okay. Different approach.
The system was not moving on its own. So I was going to have to move it.
I started making calls. Not to scheduling. Not to the referral department. Not to the patient advocate who had already told me I was still within the time period and hung up.
Different calls. To different people.
Who knows someone at Blue Shield? Is it the insurance company slowing this down or is it UC Davis Cancer Center? I needed to find out which wall I was pushing against before I could figure out how to get through it.
I pulled some cards. Called in some favors. Got myself on some VIP lists — in quotes, as they say, because VIP feels like the wrong word for a woman trying to get a cancer referral processed before she loses her mind — but whatever you want to call it. I found the right people. I made the right calls.
And then I kept waiting.
Monday, April 27th. I was driving back up to Sacramento from Benicia. I had a panel to speak on. A professional commitment. The work that doesn’t stop because your body has decided to become a source of urgent medical questions.
So I showed up. Because that is what I do.
At 10am that morning — still driving, still in the nowhere land — I called again.
Sorry. Still no paperwork.
I parked. I walked into the panel. I sat down with other professionals and I spoke about the work I have dedicated my career to. Voter outreach. Civic engagement. Trusted messengers. The infrastructure of democracy.
And inside — quietly, beneath all of it — I was a woman waiting for a cancer center to find her paperwork.
At 1pm. After the panel. Walking back to my car. My phone rang.
They had the paperwork. I stood in a parking lot in Sacramento and I made the appointment.
May 1st. UC Davis Comprehensive Cancer Center. A surgical oncologist named Dr. Day.
I had been fighting for this appointment for eleven days.
Eleven days from the CT scan to the oncology appointment.
Eleven days of phone calls and closed offices and clicks and patient advocates and pulling every card I had.
Eleven days of the nowhere land.
—
Five days later — May 1st.
Terri came to pick me up. Not meet me there. Came to my door. Because that is what you do for someone who is about to walk into a cancer center and may or may not be able to hold it together.
We drove to UC Davis Comprehensive Cancer Center together.
We valetted the car.
I want you to sit with that detail for a moment — the valet. The ordinary, unremarkable, logistical fact of handing your keys to a stranger and walking through the doors of a cancer center. Life insisting on its own mundane choreography even when everything inside you is anything but mundane.
We walked in.
They were on time. Almost early. Which felt strange — I had been waiting eleven days for this appointment and now suddenly the system was moving faster than I expected.
We settled into the exam room.
A resident came in first. Asked questions. Took notes. The warm-up act before the main event. Terri sat beside me with her pen and her pad — the extra set of ears I had known I would need, the witness to whatever was about to happen in this room.
And then the resident came back. With Dr. Day.
He looked at me. He looked at the scans. He did not waste time.
I’ve looked at your scans. And I’m pretty sure this is pancreatic adenocarcinoma.
Period.
Not — it could be. Not — we need more tests to be sure. Not — there are several possibilities we should consider.
Pretty sure. Pancreatic adenocarcinoma. PAC
I heard the words.
And then I said the only thing that felt true in that moment:
Wait. That’s the BAD kind of cancer.
—
Between that appointment and today — as I write this — there have been more phone calls. More waiting. A tumor board that reviewed my case and saw something non-classical in the fluid around the mass and wanted a biopsy before surgery. A six week queue that I could not accept. More cards pulled. More strings worked. More of the only thing I know how to do in the face of the impossible:
The next call. The next step. The next thing I can control.
The biopsy is scheduled.
I am still in the nowhere land.
I still do not know what this mass is. I do not know what the next chapter looks like or what I will look like on the other side of it. I am still standing in the doorway of a story I did not write, holding the doorknob, deciding — every single day — whether to keep walking through it publicly.
I am deciding yes.
Because someone else is sitting in their own nowhere land right now.
Maybe it is a cancer scare. Maybe it is something else entirely. Maybe it is the particular cruelty of a healthcare system that clicks in your ear while you are trying not to fall apart.
But you are in the doorway. And you are not alone there.
I am right here with you.
Still beginning.
—
Every detour was the path.
…stay tuned for Episode 3