Fast facts (if you don’t have time to read the full post): This week is Adolescent and Young Adult (AYA) Cancer Awareness Week and I feel compelled to write you a blog post. Surprise, surprise?? Most of it will be just about my thoughts and feelings about this week, but some of it will be about my most recent cancer appointments. I hope you stay for it all. Thanks for reading.
Countdown to Tokyo, Japan: 22 days
TO THE LONG VERSION!
5:54 pm: I open my Instagram app and the feed refreshes. There’s a selfie of a cancer thriver I’ve followed for a while now. I scroll to read the caption, only to find that it is a letter to her followers.
“Final update: If you are reading this, then I have left earth side.”
She thrived for three and a half years. She was 33 years old.
Mermaidwithcancer was one of the accounts I started following through a campaign last summer I was invited to be part of that focused on stage IV breast cancer thrivers. I did it because I was looking for community and sure enough, I found them (and they found me!) So many are advocates in their home towns and virtual spaces, raising funds and awareness for a disease that can be so damn relentless and unforgiving. These women never aspire or want to be inspirations; they all just are trying to make lemonade out of lemons. And most of the time that lemonade is tart as hell.
Still, no amount of sugar can soften the truth: we are so often expected to battle, to be brave, to bear it all in combat terms. In the cancer world (in general), the metaphor of “fighting” is often used.
War.
Winning.
Ongoing.
Battles.
Loss.
Lose.
Today, a friend I met online sent me a message about a video I shared to my story for AYA Cancer Awareness Week and she shared the story of her daughter’s best friend who “negotiated” with cancer in her 20s.
Pause.
Negotiated. With. Cancer.
I rolled that around in my head. Cue lightbulb moment.
6:03 pm: I’m staring at my phone in the bathroom, trying to figure out where all the fucking ants on my bathroom floor are coming from, and having this weird argument in my head that she didn’t lose her battle (because I *hate* the metaphor of fighting), but the terms of the negotiation somehow had ended and I am half crying, half laughing at the change of language and wondering if mermaidwithcancer would agree with the reframe. (This sentence was meant to be a run-on thought. My grandma is rolling in her grave over my disrespect of proper English writing and the lack thereof.)
6:37 pm: Negotiating. Negotiations. Negotiate.
6:44 pm: My body is rude as hell. I don’t fight. I negotiate.
I broker peace with injections that shut down my ovaries.
I sign contracts in side effects.
I take hard drugs for the chance of soft hope.
I infuse myself with poison and call it progress.
I live with pain like it’s rent I owe.
I surrender the idea of “healthy” in exchange for “here.”
I swap scans and blood draws for a sense of security.
I am just a woman at the table, trading pieces of herself for a shot at more time. And I bring my whole self to it. Every damn day.
This does not make me brave. This makes none of us brave.
We bargain. We bend. We give up parts of ourselves we didn’t know we could live without. We make impossible trades for a few more tomorrows.
Wouldn’t you?
7:08 pm: I turn 33 in two months. In August of this year, I will hit my three and a half year milestone of living with this fucking backwards disease, and this week just makes me feel like a bleeding heart.
AYA Cancer Awareness Week puts a spotlight on stories like mine. Like mermaidwithcancer. Like ours. But sometimes that light feels too bright. It exposes everything I try to tuck away just to get through the day. And then I remember awareness isn’t about spotlighting strength; it’s about telling the truth.
It’s about honoring the ones who ran out of things to trade.
It’s about making space for the ones still negotiating.
It’s about reminding the world that young adults get cancer too and we are not just numbers or hashtags or statistics to be inspired by. We are underserved, unresearched, and under resourced.
We are human.
We are exhausted.
We are still here.
And sometimes, being here is the most radical thing we can do. And when we’re no longer here, it doesn’t make us less. It means we gave everything we had.*
*In memory of mermaidwithcancer and the many other stage IV breast cancer thrivers we have lost. Rest in power. #StageIVNeedsMore
The month’s go by too quickly. Yet again, just a couple days ago I found myself back at the cancer center for another round of blood draws, a visit with my oncologist, and ended with a (surprise) infusion and monthly injection. Since this blog post has already been a doozy, I will try to make it less intense and more… I don’t even know??? Cancer is always intense and this narrative I am currently in just keeps getting WILDER.
I embodied the Brave Little Toaster on Monday. Harry Porter (my port) FUCKING DID NOT WORK AGAIN. I do not understand what the point is to have this little noodle strapped into my aorta if its not going to give the people what they want. And just in case you don’t know, we want blood. Lots of it. Some for labs and some for sacrifice to the trash gods.
Normally I force the nurses to work on me for like 30 minutes and then TPA me, but this time around we all were just defeated and I accepted my fate of having my blood drawn from my left arm. I have not had my blood drawn that way since one of my chemo sessions in 2022. This was a big fucking deal. One of my favorite nurses held me to her chest as I bawled my eyes out in defeat, another sprayed freezey spray on my arm, and another poked me.
For the record, this did not feel like a negotiation where I got anything in return, at least physically. All I got was a bruised ego and even more bruised arm. I didn’t even get a sticker.
But let me tell you… I love my cancer center nurses more than I can ever communicate. These women have been with me since day one and I can’t imagine a better team to help me survive.
After ruining my top tier mascara, I dragged myself over to the next waiting room. Thirty minutes later, I was waiting anxiously for my oncologist. Anxious is probably an understatement. I was ready to throw it DOWN with her if she mentioned the removal of my ovaries again.
Y’all… the conversation with her could have not been more different than last month’s. In summary, no mention of the removal of my baby keepers, I was granted a small break from oral chemo and will officially begin May 12 when I return from my trip, I am back to just a year-long commitment to oral chemo (which aligns with the timeline I was on with Verzenio), and she was happy that I was NEAD.
How is it that the goal post just keeps moving? I like that it is closer, but now I am questioning why it is so close.
Now, what I didn’t know until I had labs was that I had my bi-annual Zometa infusion. If I had known, I would have brought all of my party chemo pod supplies: IV lights, cat banners, and little gifts. Despite the lack of supplies, I was in a klepto mood and stole some tuna and crackers from the snack bar and had another favorite nurse scoop me up some Tillamook cheese for chemocuterie. I just wish I could have had a pod friend to enjoy it all with.
I went back to work for a couple of hours and then made the second trek of the day to Richland for my follow up with my new PCP aka my new favorite medical hero. Now this appointment went way better than expected: we addressed my weird smelling pee (turns out I have a UTI), addressed the pain that I thought was a PE but wasn’t but still lingered (turned out to be a rib out of place), and then I took an A1C test to see if I was prediabetic. I am technically not, but was .3% away from being out of range so…. what gives, body? I also requested a massage therapy referral and received that the next day. Top tier service.
I left feeling like we had solved some problems. Speaking of solving problems… I am waiting for a call back from Fred Hutch Cancer Center in Seattle for a second opinion appointment. If you’re not familiar with Fred Hutch, they are one of the top ten cancer centers in the world! And its just a quick little 4 hour drive. Yay.
To say that my emotions are on a rollercoaster this week might be an understatement. Good news. Sad news. Everything in between.
In the grand negotiation of staying alive, I guess this week I traded blood, tears, and mascara for NEAD, cheese, and a massage referral.
Honestly? Not the worst deal I’ve negotiated.
Today’s song lyrics of the day are brought to you by Linkin Park.
“I wanna heal, I wanna feel what I thought was never real
I wanna let go of the pain I’ve felt so long
(Erase all the pain ’til it’s gone)
I wanna heal, I wanna feel like I’m close to something real
I wanna find something I’ve wanted all along
Somewhere I belong”
madisonhatescancer 