Behind the Curtain: The Cruelest Wait

A living memoir of illness, love and everything after.

 My Dear Friend,

Every time I sit down to write you, I imagine you across the table, with a cup of coffee that's still hot or depending on the day, a lemon drop martini, palm on chin, not flinching at the weight. Tonight’s letter is another chapter I never wanted to write. It’s about waiting, and what waiting does to a body. About denial, grief, and the strange places where the dam finally bursts.

The truth is, when you’re living under the shadow of scans, every ache whispers “it’s back.” And when the waiting stretches long enough, denial can feel like the only survival strategy. Until suddenly, it isn’t.

So this week, I’m rewinding the clock. To two month back to the first gut pull that told me things were about to shift again. This is the story behind the scans, the scars, and the two words that changed everything.

But first, a recap:

It's been almost three years since I wrote about the words I never thought would define me: breast cancer. - I know, I know. It doesn't define me, but it has reshaped who I am now. It has dominated how I am able to get up in the morning and mostly if I can create that day or go back to bed.

Back then I stepped into the unknown like a woman reading a map in a language I did not speak. I trusted the white coats. I thought my role was simple: nod, hold your breath with your eyes closed, and follow the lead.

That illusion shattered that December 2022. My first oncologist vanished in the middle of my second round of chemo. No goodbye. No handoff. Just gone. Clinics were closing their books for the insurance year, and I was out in the dark.

My husband pivoted, the way he always does, and found me a new clinic. The chemo nurses there became my guardrails. They carried me through treatment, then the double mastectomy — the amputation of the part of my body that declared: I’m female.

I chose flat closure, fearing complications from reconstruction and more surgeries than I thought would be necessary for me. What I didn’t expect was the neuropathic pain that moved in like a permanent tenant across my chest. I don’t regret the decision, but I live with the cost.

Then came the pathology, the words that gutted me: “greater disease than realized.” Cancer had already broken out of my lymph nodes, leaking into my bloodstream. My doctor said plainly: “You’ll always be in treatment.”

That’s the cruel paradox. A scan can say no evidence of active disease (NEAD) and yet cancer still swims, patient and silent.

The Drift Into Nowhere  

Radiation and oral chemo meds for the next year would dominate my ability to get out of bed. Then my white blood and platelet count plummeted. I was ordered to stop all treatment to see if that was causing the crash. Months went by and the numbers kept slowly declining. A bone marrow biopsy was ordered but it revealed that it was not the leukemia my Dr. suspected. A SLE lupus diagnosis soon followed. What? Like, I'm just collecting diseases now?

 Then the drift into silence. My oncologist treated me like a hot potato, passing me and all my pain to my autoimmune doctor.

The lupus meds put me in a fog. Friends told me, “You look really good.” They couldn’t see the trapdoor I was standing on.

When AI Became the Messenger

Out of desperation, I did something wild...I downloaded every record, biopsy, labs, bloodwork from the beginning until current and handed them to ChatGPT. I asked, “Where are the holes? What are they missing?"

The response came back like a verdict: I was being under treated and I needed a coordinated team. It suggested UT Southwestern. Although I agreed with this conclusion they hadn’t taken my insurance in 2022. Then the reason we have learned to use AI. To give us information we did know to get or how to get...BAM! it said they renegotiated in April 2025 and now accept my insurance. I was in disbelief so I checked my insurance website and there it was!

My heart started to race at the crazy convenient timing that did not seem like a coincidence. I searched through the Hospital website and found three oncologists that fit the profile; breast cancer only and metastatic focused. I landed on one that was the top candidate because she had high honors, awards and did her fellowship at the one cancer hospital I would want to go to in NYC.  She was accepting new patients!! I applied and let it go. A week later, the intake nurse called. She set me with Dr. Heather MacArthur, Director of Breast Cancer Research on Sept 9th at 11am, only two months away. The alignment felt undeniable, my faith, my gut, and technology all pointing the same way.

The PET Scan

A few weeks before the scan I told my husband, “If IV chemo ever comes again, I need a bedroom that feels like comfort, not survival.” No more words were needed. He started ordering paint samples from Farrow and Ball. More on that later.

Thursday was the scan day and my husband took as always. I could feel his silent weight as we waited for my name to be called. But scanxiety is a real thing for cancer patients so it was to be expected, I was walked back to the unit specially designed for these scans and was injected with radioactive glucose so that any activity in my cells would light up. After 45 minutes on the CT imagining machine I was done. Then we wait.

Friday: nothing.

Longest weekend.

Monday: nothing.

Tuesday: nothing.

Convinced it must be unremarkable because why would it take so long. I must be low on the priority. And then in the dead of night, the report landed by Wednesday morning I was opening the portal results. Two full pages. I couldn't read it. I screenshot it and sent it to ChatGPT.

The response:

 Metastasis in the liver

 Multiple lesions

 A suspicious portocaval lymph node

I sat in disbelief. No call from my doctor. Just me and the portal.

Thoughts of "did I cause this? All of my worry brought this on? Every follow up had carried the whisper, “Is it back?” In my organ? Why am I alone? Where is my DOCTOR?

The Appointment That Poured Gas on the Fire

The following week I went to my oncologist pre-scheduled appointment, report in hand. I expected a plan. I got a shrug.

“It could be inflammation,” she said.

“The report says metastasis to the liver,” I replied.

“Well, hormone positive disease usually shows up in the bones or lungs first.”

There it was, the tidy rule book cancer never reads. My body was telling a different story, and she was arguing with the text. My nervous system sounded the alarm\, you are not safe here!!

If I was going to fight cancer, I wasn’t going to fight for my reality at the same time.

Biopsy Day

I scheduled the MRI for the following day and the results hit my hospital portal 4 hours later, confirming what we already knew. There were more details like size and position that the radiologist would need for the guided biopsy. It also said that the liver was covered in lesions, more than they measured.

There was a Friday morning cancellation slot. I took it.

Biopsy to the liver just sounded bad. I could not think of a scenario where that is not painful or scary. It was done guided by the ultrasound with the map of the MRI. A thick core needle is inserted and then a smaller needle is threaded into the larger one that grabs the samples. I was awake but thankfully, heavily drugged. Somewhere in the fog I told the nurses that I felt like I was at Trader Joe's—where the employees are cheerful, helpful, maybe too helpful in the best way. They laughed. I survived. I was observed for 3 hours to make sure there was no bleeding or infection. I was cleared and went home.

The Cruelest Wait

Then came the waiting.

This is the part no one warns you about: the space between knowing something is there and knowing exactly what it is.

It’s a kind of purgatory. You wake up every morning with cancer inside you, but the world says, not until the biopsy comes back. No treatment. No plan. Just days that crawl while the fire burns.

I lived that week. Every hour dared me. What if it spreads while I wait? What if the right drug exists but I can’t touch it yet?

 This, more than chemo, more than scars, is the part that guts you.

The One Who Stayed

During that time of waiting for the results a journal prompt came up as it did every Sunday. I moved to feel this was just as divinely necessary as learning about my ability to acquire a new care team. This one thing that mattered rose up in me like a tide, a prompt from Isolations Journal.

Journal prompt: If you’d like, begin with the words, “When somebody asks me who ____ is,” and see where it leads.

 I wrote:

When somebody asks me who Ehli is, I hesitate. Not because I don’t know, but because how do you describe a man whose love has shown up like clockwork and like magic, in equal measure?

He is the kind of man who never gave me silence when I needed answers. Who never made me feel alone, even when everything else in my body was unraveling. Who never needed the spotlight to remind me that he’s in this — all of this — every day, every breath, every scan, every letter. He’s the man who documents every appointment, every test, every drug I’ve tried, like a historian collecting proof that I was here and that I mattered.

Some people tell stories with a loud voice. He tells them by staying. By walking beside me with calloused faith, not just when the waters rise, but even when they recede and leave behind everything dry and cracked.

Because when I look back, and when I look ahead, the thing that keeps me tethered to this life is not the treatment, not the prognosis, not even the milestones… it’s him.

The man who says he finds purpose in loving me but what he doesn’t always see is that his love is the purpose. The map. The evidence. My miracle.

When somebody asks me who my husband is, I don’t give them a list.

I say: He stayed.

And in a world full of people who leave, that’s enough to be everything.

The Result

  A week later, the portal pinged. 

“Positive for metastatic breast cancer. Estrogen- negative. Progesterone-negative.”

 I was in shock. I had been 90% hormone-positive at first diagnosis. The Addendum to the pathology was going to take another several days to show the results if I was going to be Triple Negative. Now? How did that happen? How did the biology change so drastically? What does that mean?   

Below is a brief and simple explanation:

The Addendum

 

Tuesday at 5pm, Sept 8th the addendum came in. Stage 4 Triple Negative.

 The words landed like a gavel, sharp and irreversible. The diagnosis that strips away options, the one you never want your name beside. In that moment, everything narrowed, the scans, the waiting, the gaslighting, the scars, all funneled into these two words. And yet, beneath the fear, I also felt the faintest thread of resolve. Because this was the exact reason I’d found my way to my new care team, to the Doctor whose life’s work is studying Triple Negative breast cancer. It felt like devastation and direction at the same time. It felt like God divined.

 Wednesday at 11:00 am Sept 9th was my originally scheduled appointment from two months prior. Let that timing sink in. I know I did. I still am.

My meeting with her. The plan (still waiting on more results from her pathology of the biopsy), the incredible precision of the team will be in part 2 of this letter coming Oct 5th.

My next appointment is Sept 30th and the start of my new chemotherapy. But first, my family decided on a last minute beach vacation leaving this week and back 12 hours before I start my next round.....

The Next Sale and Happiness Project Vol 5 Announcement will also be included.

To be Continued  

Thank you for the love, the support, standing by me, Getting Checked and being the voices that calm me. I love you!

With all my gratitude,

Mel