When the Air Leaves the Room

This will be a two-part post. This part is being written on Monday, January 17 in the evening.

Tomorrow I have a PET scan to see if my cancer has metastasized. The fact that I am even getting a PET scan is an ominous sign. It means there is a chance I have a terminal disease. I am not trying to be trite here. In this moment, I have a chance of finding out that I have incurable disease within the next 24 hours. Yes, we all could die tomorrow, but to have it be a yes or no answer within a matter of days, is its own special kind of hell.

There are things on my pathology report from surgery last week that are concerning. This cancer is unexpected, obviously, unusual in many ways and has started to leak into my skeletal muscles.

I made the mistake of googling ‘carcinoma invades skeletal muscle’ from my path report. Not only is it exceedingly rare, it is exceedingly deadly. What I could find was a study of 2 Korean women. That was the focus group.

I have messaged friends who are doctors who are trying to convince me that in my case, it is not so bad. I want desperately to believe them, but what are they going to say? ‘Oh yeah, you are fucked,’ via text?

I have been able to keep the incredible wave of fear at bay since finding out my last surgery wasn’t a success, but the levee has been breached because there are definitive answers within my reach. I am in a phase of fear and sadness that I have never experienced. I am weeping because I have to think about what I will do if I get bad news. I cannot be 100% unprepared for this. I have too much on the line. All I can think about is missing the lives of my three young kids.

I hope to all hope that when I revisit this blog in a day or so, I am embarrassed by the intensity of this writing. I don’t know who I pray to, but I PRAY that I am lucky enough to get to be able to make the surgical decision whether to go flat or to keep my implant. If I get to make that decision, I am the luckiest person in the world.

I thought about posting this on its own, in real time, but even me, your favorite over-sharer can’t do it. It is too big. Kind Facebook comments can’t wipe these feelings away. These hours are sacred. They separate me from impending despair or sensational hope. I can’t share this time. It has to only be mine.

Wednesday January 19, 2022 A Day of Sensational Hope

I will not bury the lede, my PET scan results showed no distant metastases. This is the BEST CASE SCENARIO and reason to absolutely celebrate.

Now I will back up a bit to Tuesday morning, the morning of the PET scan. For those who don’t know, a PET is the gold standard scan to look for cancerous activity within the body. They only give it to people who have a real chance of having a poor outcome.

The test itself was fine. It took and hour and a half. I took a Klonopin, obvs. I went straight from the test to school because I needed the distraction of work and cute elementary school kids (at this point please erase from your mind that I had taken a Klonopin).

I knew from a friend who works in radiology at NS that my report would be read right away. I also knew that these reports take a while to complete. I figured it would be complete around 1pm.

The first half of my day was fine. I taught the kids with a soft mix of radioactivity and anti-anxiety drugs coursing through my veins. Things started to devolve around lunchtime. By 2pm I was crying in a corner of my Principal’s office. I’ve never vibrated on this frequency before. It was the purest fear.

As I was walking out the door of school I got a text from my breast surgeon that went something very much like this (paraphrased): “Saw your PET. I am going to order a breast MRI. I am scrubbing in to a surgery now, but I will call you later”.

WWWHHHHAAAAATTTTTT??? I am sobbing in the school parking lot. I text back, “Is it clean?!?!” She writes back “You are not stage IV, call you later”.

I had asked my husband to come home early to be with me when I got the news. I drove the short few blocks home and collapsed into him. It was relief from hearing I am not stage IV, but still fear because that text chain simply wasn’t enough information.

Somewhere between 1-5pm I call and message the oncologist multiple times. They are usually very good at getting back to me quickly so their silence felt like more of a bad omen.

Around 5pm I see that I have new test results. The PET is in and now I am given the task of interpreting my own report which is ridiculous on every level. Allow me to summarize, The whole breast area and some lymph nodes are a mess, but there are no distant metastases.

I am breathing a much larger sigh of relief, but would still like to hear from a doctor.

I finally get a call from my breast surgeon after she finished her surgery around 6:15pm. She thought the oncologist had called me much earlier in the day. When she sent me those texts, she thought I already knew everything. She walked me through things and for the most part it is great news. She re-iterated that I am not stage IV, but I do have a whacked-out bunch of cancery things lighting up in the right breast area including some muscle. This is why we are doing the MRI before surgery next week.

There is much to still be decided by both my new pathology from the upcoming surgery, the MRI and the Tumor Board which is a meeting of all breast surgeons and oncologists, which is Monday morning. It is looking like after surgery next week, some healing time, then most likely chemo and then radiation.

The surgeon kept confirming that my cancer was ‘just weird.’ Everyone who looks at my reports can’t believe it. ‘It’s just so bizarre.’

That’s me- Bonkers- but so damn happy to have choices in my health care that will KEEP ME ALIVE.

PS- I am not embarrassed by part 1 of this post. Those feelings were very real and deserve reverence and respect.

10 Comments Add yours

  1. Melissa says:

    ❤️

    Like

  2. Liz Gaonach says:

    Oh, thank God! But also…WTF?! I’m so relieved but also so sorry you have to keep fighting this. You are amazing.

    Like

  3. Meg Metzler says:

    Oh, Grace…. You are SHOWING Grace in how you’re handling this. Any of us who have had cancer know this is our worst fear and for that little bastard to weasel its way Into the little tissue left there is incomprehensible. You are on my nightly prayer chain. I’m calling you by name so God knows where to send Her light.

    Like

  4. Karen says:

    So glad to hear it isn’t the worst of the worst as you feared but also join the choir of those who admire and care about you in saying this all still sucks. And you, of course, should not apologize or question all the fears and feelings you shared in part 1 – this is the real, raw reality of cancer. 💗

    Like

  5. Kelly Glauberman says:

    So fucking happy for you. It’s weird to say “so fucking happy for you” to someone that may need a second go at chemo, but that is what this shit does to us, isn’t it??

    Like

  6. This entire post took my breath away ……
    Waiting to get to the end. Omg! What a ride! Cancer sucks. Obviously

    Like

  7. Sheila Roche says:

    Just met you TLP . Your blog blew me away. So relieved it is not Stage IV and there are treatments in line! Chemo sucks, but you did it before and you can do again. Sending you positive healing energy 💫

    Like

  8. Mary Porcaro says:

    Grace, I am so sorry you have to endure this again. I am so grateful to hear that you have positive options to choose from. Please know that I am here for you and your family whenever you need anything. You are a fierce warrior, and you will get through this again. Sending you love, positive thoughts, and hugs.

    Like

  9. linda r hitmar says:

    I have no words…..I have followed all of your blogs from the beginning, and I care about you…..

    Like

  10. Colleen says:

    You write so well. It’s so hard to accurately capture that fear in words but you do. I remember walking down the sidewalk crying, clinging to a box of brownie mix I’d just purchased in order to busy myself while waiting for an MRI result of my hip & pelvis (it was negative). We are all holding out our internet arms of support for you.

    Like

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