Fast facts (if you don’t have time to read the full post): Ooops it has been 5 months since my last update. Let’s see… in terms of fast facts I have been on Verzenio officially for six months, with a year and a half to go; I went to Europe in September and enjoyed my ~dream trip~; I completed in my first CrossFit competition and also had COVID for the fourth time literally days before; and I was supposed to have reconstructive surgery on November 11 and received a call a couple weeks before surgery that it would be cancelled indefinitely due to saline IV shortage, only for it to be rescheduled for February 3, 2025. It has been a wild couple of months.

Countdown to last day of Verzenio: 546 days

Countdown to reconstructive surgery: 64 days

TO THE LONG VERSION!

Ask any cancer survivor and they can likely tell you the date of their last day of treatment just as easily as they can tell you their birthday. Hell, most can tell you the exact day and time they received their diagnosis. It is hard to forget a life-changing moment like that, with these benchmark dates just as memorable as the quantity of years that pass.

The first five years after a metastatic cancer diagnosis are considered the most crucial because most recurrences of cancer happen within this time frame, and the five-year survival rate is often used as a benchmark to assess a patient’s prognosis; meaning if a patient survives past five years, their chances of long-term survival are generally considered higher. 

Each day I feel like I am banking more time in my survivorship fund, but I wonder when life will come back and ask me to cash out. Even as I approach my three year cancerversary in February, the paranoia of cancer ravaging my body once more looms like a dark far off storm cloud, and for good reason.

Every three months I take a blood test called Signatera that compares my blood sample to my tumor sample, looking for the unique “footprint” (for a lack of a better term) that is indicative of my specific cancer DNA. I started taking the test in 2023 shortly after I finished active treatment. My insurance has been a bitch and has been refusing to cover it (each test is about $5,000 out of pocket) but my oncologist told me to take it anyway and to ignore my insurance. Yeeeaaaaaaahhhhh ok. It is fairly new to the breast cancer world, only being FDA approved in the last couple of years if I remember correctly. It feels very science fiction but it is one of the reference tools we have in our arsenal to monitor for recurrence. It is not the end all be all decision maker, but it is insightful and helpful.

Since I started taking the test, all of my tests have come back negative. The little chart reads 0.0 and I get to go back to pretending that I am invincible because I take all the drugs and do all the things to keep cancer away.

That is, until my most recent results.

I went in for labs November 18. We had my normal labs to pull, as well as the three vials that came in the Signatera box. My favorite nurse Jessie saw that my oncologist did not ask to pull labs for my other two (less impressive) labs that also monitor specific proteins in my blood that can be indicative of cancer, but she pulled additional blood for it anyways per my request. I didn’t see a provider and I went and got my monthly Capri Sun stomach stabbing. It was a regular visit with nothing impressive to note other than I did not get my free cheese (and I am still upset about this.)

I haven’t been receiving the results of my Signatera labs the last couple of times I’ve had them done. I don’t know why. For a couple of tests, I received something in the mail about them being negative, but lately I stopped getting any communication and my oncologist would just report back that they were negative. This time around I felt like it would be no different. But on Wednesday, November 25 I received a text at 8:30 in the morning that I could log in to view my Signatera results. Weird, but cool since I am nosy and enjoy that flexibility. I created an account and logged in to see an uptick in my chart and the worlds “Final results summary: Signatera positive” with a flat line of results and a big line up to the .06 range.

When I tell you that I spiraled, I SPIRALED. I felt sounds turn to white noise, my hands became clammy, and the air was sucked out of my lungs. Why do terrible things happen to me right before the holidays??! Or on Fridays. The universe really loves to see me squirm. I generally have bad luck with bad news on days that I can’t do much about it. Decidedly, I needed to talk to an adult who was smarter than me. I screenshotted the results and sent them to my nurse friends and then to my oncologist via MyChart. And then I just went emotionally numb.

This was a day I didn’t want to ever have. The paranoia has been justified. Is this is punishment for thinking everything might be okay, that I could be one of the lucky ones? I irrationally rationalized and justified the blip in my blood work timeline as a fault of my own doing, despite the lack of evidence. Even almost three years into this, I feel immense guilt for a disease I cannot control.

Most of the time spiraling gets you nowhere except farther into a land that is hard to come back from, but it worked out on Wednesday. Nurse Jessie (my favorite!) messaged another nurse working with my oncologist directly that day, which triggered a call directly from my oncologist (lucky me) about how I don’t need to worry and that (and I quote) “this is why you are taking pill after pill because you are high risk.” And that these pills will go after anything that is trying to stir up trouble and in three months we will re-evaluate with another test and see what’s up. She said it as if it was of comfort to know that in THREE MONTHS I CAN GET MORE ANSWERS and as if lines of treatment can’t/won’t fail.

I feel defeated. I trust my oncologist. She is aggressive in her approach and has not led me astray as of yet. But something no longer feels right. I am trapped in my body with no way of knowing if, when, and where cancer is hanging out. I have no boobs to feel for local recurrence. If I could reach in and feel up my liver (or any organ, really), I would. All I have is gut instinct and some blood tests and that is it. That little .06 has torn apart any sense of security I had built from surviving up until this point and it has left me vulnerable. I am at the mercy of my targeted therapies and the possibility of false positives. But I can’t help but wonder if it is enough?

I see my oncologist on December 16 and maybe I can advocate for some scans or something. At the very least guess I’ll get more assurance and clarity about what this .06 really means because my oncologist is on chill mode and I am over here planning my funeral. But what’s fucking new?

Today’s song lyrics of the day are brought to you by Linkin Park.

“I let you cut me open, just to watch me bleed
Gave up who I am for who you wanted me to be
Don’t know why I’m hoping for what I won’t receive
Falling for the promise of the emptiness machine”

– The Emptiness Machine, Linkin Park