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Mercy :)

@beeba.beats

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@non__mercy and her cancer/chronic illness journey
HL🎗️10/2020-03/2021
ME, POTS, Fibro/CPS, MCAS, and more

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Update!!
My “five years in remission” date is in March, but my body thought that was getting off too easy. So I have since been diagnosed with a chronic fatigue syndrome called Myalgic Encephalomyelitis, and it has rewritten my life. I decided to expand what this account is (after taking inspiration from the amazing @aditisroom ) to include updates, info, awareness, resources, “day in the life” snapshots, and more for both my experience as a pediatric cancer survivor and a chronically ill/disabled college student. by @beeba.beats

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9 months ago

Woo hoo!! Officially in remission!!! I got to ring the gong, get my picture for the end-of-treatment board, hear all the reassuring comments about my pulmonary/cardio function, and smile so much my cheeks hurt because my team is so amazing. Thank you to Dr. Wilks, Dr. Olsen, Laura, Jana, all of the wonderful nurses, and everyone else who has supported me and my family throughout this crazy journey. I’m so excited for life after cancer, let’s kick some butt 🍑 by @beeba.beats

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6 years ago

Today is the final day of September, which means Blood Cancer and Pediatric Cancer Awareness Month is coming to a close. These past few years, I have highlighted different organizations and ways to get involved, written about my experiences and shared memories, explained misunderstood aspect, spoke to the undiscussed parts of survivorship, and more (just scroll back on @beeba.beats to see).
I have been struggling to decide what to do this year, my fifth summer cancer free, the September after I reached five years in remission. It’s hard to explain how much my own pediatric blood cancer diagnosis still affects me to this day. But I tried, and evidently it was too much for an IG caption, so instead I posted screenshots. I have shared almost all of the photos and videos I am comfortable putting out there publicly in an effort to convey the expanse of my experience and to continue to draw attention towards the demands of the field through novel suffering. I have had people steal my photos and use them to get money to “help them pay for treatment”. I have been given incredible access to large platforms and widespread networks. I have had people comment or message ableist and just mean things. I have been eternally fortunate to receive, along with my family, the fruits of the American healthcare system aka community GoFundMes and MealTrains (which truly kept my family afloat). I have had plenty of people simply come to my page for some “grief tourism”, using my suffering just to feel something. I have connected with and grown close to fellow survivors and patients. Social media is such a double edged sword, but I am so grateful for it, and the space it gives me to share my thoughts and experiences, especially now.
Here’s to many many more Septembers spent reflecting and looking forward to taken in Cancer Free by @beeba.beats

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18 days ago

Five years. I don’t really know how to begin to comprehend. Hitting five years in remission is the closest you can come to being cured when you have cancer. And that is today. Unreal.
Cancer was not the first “world shattering” for me and my family, and my own diagnosis was certainly not the last. There has been so much to survive, and the gritty reality of living in survival for nearly a decade has taken its toll.
But as I eat dinner with my entire family around me, having flown in, skipped school, designed a weekend around celebration and pure time together, I am left speechless not with sorrow at what has been suffered, not anger at what has been so utterly unfair, but with gratitude for the battalion that has never stopped fighting on my behalf.
I feel more like myself every day, I find joy in ever new places, I get to experience the life I was worried I would never get to see with such thirst for it. I get to laugh until my belly aches alongside people with sunshine souls and courageous hearts. I get to learn and mourn, play and cry, dream and scream, hope and hurt. And I truly do see every next day as a gift, the better face of a flipped coin, the better timeline.
Cancer hurts me every day, and I will never be truly free from its scars. And, I am able to celebrate loudly today, without worry of jinxing or taunting the death I only just avoided. And it feels like the most refreshing kind of joy.
Between this mercy and the one writing this right now, I finished high school, starred in a show, drum majored for an incredible band, started rock climbing, began to write, did cancer research, got into stanford, made incredible new friends, worked at organizations so near to my heart, shadowed oncologists, began to read again, went to my first concert, celebrated becoming an adult, voted for the first time, gone on endless adventures to beautiful places, learned more than i could ever hope, see my siblings turn into the coolest people i know, and love my parents as loudly as they will tolerate. and the small things, the jokes and meals, lawns laid on and songs hummed on a walk, dog cuddles and muffins baked, shone just as bright. i’m so so happy to be here. taken in Seattle Children's Hospital by @beeba.beats

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7 months ago

mental health care

(sorry for all the videos… at the moment speaking is easier for me to express myself than writing) by @beeba.beats

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9 months ago

getting healthcare!! by @beeba.beats

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9 months ago

shoe tying and wearing shoes in my bed sometimes :/

tying/untying shoes can be difficult and sometimes i’ll be so fatigued that i will collapse to my bed the moment i get into my room. no untying the shoes saves me time and energy and means i can sleep until the last second before having to go somewhere else later that day (ex: dinner) by @beeba.beats

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9 months ago

Another series!! The “grosser” or harder to accept side of ME

Between the energy it takes to leave the room and go to the bathroom and how my hand strength is doing, sometimes brushing my teeth isn’t feasible. So instead, I will gargle the strong Listerine mouthwash and spit it into my trash can (lined by a plastic bag). Not ideal but works for these types of days. by @beeba.beats

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9 months ago

hands and fine motor skills!!

taking notes in class, drawing chemical structures, taking a 6 hour written exam, brushing my teeth, holding my phone and texting, carrying dishes, washing my hair, unscrewing my water bottle… all things I have started struggling with as my hand strength and fine motor skills have decreased. by @beeba.beats

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9 months ago

facial expression and jaw/tongue fatigue!!

Drinking water, being animated, talking, eating, wearing a mask, and more are all harder because my jaw and tongue fatigue quickly. by @beeba.beats

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9 months ago

Drinking water!!

With increased muscle weakness/fatigue and decreased dexterity, drinking from a screw cap water bottle is difficult because of how you open it. But a water bottle with a straw lid is also hard because of the tongue/jaw work needed. Tongue and jaw fatigue can make it feel impossible to suck the water up through the straw.
POTS is a condition that a lot of ME patients also have, and one hallmark is the inability to hold onto water well, meaning you need to eat a lot of salt and drink a lot of water. However, the water goes right through you, meaning you have to use the restroom a lot.
Laying down takes up about 50% of my waking hours, but it’s not that simple. Laying down can be uncomfortable, exhausting, and even painful, and getting situated can be a big accomplishment. But of course, just when you have gotten pseudo-comfortable, propping up your legs or back or jaw, you need to pee again. by @beeba.beats

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9 months ago

Contact lenses!!

It’s been hard to be a contact lens-wearer with ME because I spend about 50% of my waking hours in my bed, usually in the dark and about half of that trying to nap. So there is a lot of removal and putting back in of the contact lenses since they will dry and stick to your eye if you are closing your eyes a lot while wearing them.
Another difficulty is putting them in and taking them out as I have lost a lot of dexterity in my hands/fingers due to weakness, as well as coordination and steadiness. My hands shake a lot due to my meds and this makes it frustrating to try and navigate the lenses.
A fun bonus struggle for the cancer survivor in me was the first bit of time using them, I pulled out a bunch of eyelashes. The sight of a few little hairs in my fingers sent me into a full blown panic attack, bringing me right back to the weeks when my hair was falling out and I would wake up, rub my eyes, and see the same thing. (swipe to see the aftermath of my breakdown lol) by @beeba.beats

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9 months ago