In April, I turned into a Ninja Turtle
Hi friends! Holy shit, we made it through April.
In April, I completed 18 sessions of radiation therapy and my 3rd round of chemotherapy. Scans in the middle of the month showed that the tumor is responding to treatment, and it has already shrunk 15%. Take that tumor!
In April, I also turned into a Ninja Turtle.
While I wish I could say that I brought the energy captured in the picture above to all of April, the truth is that it was a hard month. Combining chemotherapy and radiation has proved effective at shrinking my tumor. It was also incredibly taxing on my body and mentally exhausting.
Radiation was also more physically and emotionally challenging than I had anticipated.
For the first half of radiation, I had to lay in a very uncomfortable position. My arms were above my head and bent at a 90-degree angle, compressing and stretching nerves and setting off thoracic outlet syndrome (TOS) symptoms. For the second half of radiation, we adjusted my body position so that at least my right arm could be by my side. But almost immediately I developed a burn on my left armpit (which is a part of the area being radiated), let me tell you, an armpit burn is not fun.
Emotionally, I’ve felt more vulnerable than I anticipated. I’m bare chested for part of radiation, which was uncomfortable at first. The room I’m in for radiation also looks like a spaceship, which is cool, but intimidating. At one point, I was telling my mom that part of radiation is through my back and part is through my chest. She asked if I moved positions, to which I responded, “Um, no, the walls move.”
I eventually made friends with my spaceship (I mean, radiation machine). His name is Gantry (no really, that’s his name… Gantry 1). I always tell him he’s doing such a good job. I think he hears me.
Thank you to everyone who has supported me throughout this journey. Thank you to the folks who have zoomed with me or sent me messages of support, cooked for me or sent me food, sent me cards and care packages, or coordinated my community. While this journey has been hard, it’s been made easier by all of you.
In May, I will complete a 4th round of chemo, and then prepare for surgery on June 8th. If there’s anything I’ve learned from April though, it’s not to get too attached to dates. So while I’m still marking my calendar in sharpie, I also have whiteout close by. Fingers crossed all goes according to schedule.
If you’re looking for ways to support me in May, here are two wonderful options:
- Feed me :) Simone helped me start a MealTrain, which is a website where you can sign up to send me food or buy me a gift card. Scott and I are so thankful to everyone who has signed up already and kept us fed. If you’re interested, you can sign up here: https://www.mealtrain.com/trains/vez07y
- Donate! I also wanted to give a huge thank you to everyone who has donated to the Stronger than Sarcoma fundraiser. Seeing your generosity gives me hope and strength. Knowing that I sound like a broken record, I encourage anyone who can to donate Stronger than Sarcoma fundraiser. Use this link: https://because.massgeneral.org/fundraiser/2185800. And thank you, thank you, thank you from the bottom of my heart to everyone who has already donated.
Mantras Update
I’ve been leaning heavy on my mantras these past few weeks, and I figured I’d give you all an update through this lens.
There has to be room for more: While the past few weeks were hard, I’ve made strides working with this mantra. I caught myself off guard when I looked up at Scott one night and said, “I’m really happy.” It was a beautiful moment, but a scary one for me too. I realized I was afraid to say that I was happy because some part of me thought, “You can’t find happiness here. It means you’ve accepted this situation.” But acceptance is not the same as resignation. And I am happy. There has to be room for happiness and laughter and joy, and there has been, and that is beautiful.
COVID/Chemo won’t keep me from my community: As I mentioned above, I’ve been truly grateful for the way my community has shown up for me. Thank you for the phone calls and zoom meet ups. Thank you for the yoga and music. Thank you for the books to color in and books to read (I’ve read Educated, Halsey Street, The Vanishing Half, and Girl, Woman, Other, and I’m currently reading Women on High). Thank you for the care packages, comfy clothes, and beautiful cards. I feel surrounded by love because of you all.
Flip the script: I recently worked up the courage to ask my doctors what stage my cancer is. Turns out, doctors don’t stage synovial sarcoma — there’s just not enough data do it. A leading study of synovial sarcoma included 300 people and only 10 of them had a chest wall sarcoma. So of the rare, I’m in the “very rare” category. It’s hard to stay positive sometimes with so much of the future unknown, but I’m trying to flip the script on it. There are no odds, so I get to make my own. And I say the odds look great.
Be present: I realized that my previous mantra of “In this moment, I feel” was really just a call to be in the present moment. While it’s not always easy, and sometimes I need an escape, I’m doing my best to recognize the good moments when I’m in them and honor the less good moments just the same.
Breathe: Meditation has been a wonderful way for me to connect to my breath. It’s also been a tool I’ve used to help me deal with the exhaustion crash after radiation. I’ve found that when I set aside 20 minutes to do a body scan after radiation, the exhaustion crash is less intense. Thanks to folks who have shared their favorite meditation techniques and recordings. Keep ’em comin’!
Hope: Still plain and simple. When fear kicks in, I invite hope as well.
Peaceful chainsaw: The most prominent peaceful chainsaw I’ve been working with lately is my port. A port is a device that is surgically implanted in my arm, through which doctors give drugs and fluids or draw blood. It’s uncomfortable and, to me, unsightly. Every time mine gets accessed, the nerves in my arm stiffen up. But, because of my port, I never need to get an IV, and it will help preserve my veins. When I catch myself wishing I could take it out, I remind myself all the ways it’s serving me. So, keep doing your job my peaceful little chainsaw port.
Put the weight down: I could fume forever about the way the insurance approval process for radiation therapy played out. Instead, I’ll just say that this was an important lesson in putting the weight down. My family stepped up in a massive way to challenge insurance and push for proton therapy approval. If I had to challenge insurance on my own, I’m sure I would’ve either given up or gotten myself sick in the process. I needed my family to help carry this weight. So thank you again to my family for the weight you’ve carried and are carrying.
There’s so much more I want to share with you all, but I haven’t had the energy to write the way I’d hoped. My mom has started carrying the torch for me, and she created a CaringBridge where she posts every few days about my progress. If you’re looking to stay connected, join us on https://www.caringbridge.org/visit/elizabethfernandes.
So, with that, all I have left to say for now is see you later April, and welcome May ❤
