My name: Piti White
Where I live: Rockville Centre, NY
How far out of active treatment?: Chemo ended 12/6/18. Radiation ended 1/30/19.
My story:
I found my own lump on 5/3/18 just six months after my wedding and three days after I had moved in with my in-laws to save money for a house. I was officially diagnosed on 5/15 and received the news on 5/16.
I was diagnosed with stage 1 Invasive Ductal Carcinoma. BRCA negative, no mets, and was deemed cancer-free after lumpectomy surgery on 6/26. I scored high on ONCO type, which brought on need for chemo.
Q&A
What does the word 'survivor' or 'survivorship' mean to you?
Every day it's a different thing... I hear survivor and I think "not me". I feel like more often than not, it just makes me feel like I'm a fraud because I don't feel like I "should" be one. Survivorship is more of an ongoing process and feels at least a little more accurate. This is going to be a lifelong journey, right? We'll never be the same but will hopefully be OK.
If you had to describe what survivorship feels like in three words, what would they be?
Really fucking hard.
What's one thing you wished people outside of the cancer community understood about survivorship?
Bad days are so common and sometimes completely inexplicable.
What are some things that have helped you during this time?
Therapy (solo), group therapy, Instagram Breasties, reiki, acupuncture.... general distraction so my mind doesn't go off on its own.
What’s your biggest survivorship pet peeve?
This makes no sense but I hate when people voluntarily call me a survivor. I'm not comfortable with it yet! This is still an open wound.
What, if anything do you think should be done more in the cancer community in terms of survivorship?
This will make me sound like a dick but I wish there was more for young adults with cancer that isn't an instagram cookie cutter resource. Like maybe just people that I can relate to that just want to talk about how much they will miss beer and getting fucked up.
Survivorship is made to look so pretty and it's not for me. I wish there was also more of a highlight on the mental health aspect of being a survivor. Waking up every day and trying to remind myself I'm not going to die is really fucking hard. I barely feel like an adult and now I'm supposed to just be like "OK... time to go back to work/life/normalcy".
What's your favorite swear word?
FUCKKKKKKKK.
What's something you haven't said out loud about survivorship that you want to get off your chest? If there's nothing, that's ok.
I pray for the day that every pain I feel isn't going to send me down a spiral of hellish nonsense and fear.
What's your theme song?
This is super cheesy, but when I had to get an MRI, they gave me headphones and the song that came on was the diva collaboration of the century, "When You Believe" by Mariah Carey and Whitney Houston. That song still brings flows of tears.
Consider this a free space to say anything you want about this topic. Word vomit, away. No judgement. I want the realest of the real here.
Hinging off that last comment... the words "They (miracles) don't always happen when you ask and it's easy to give in to your fears. But when you're blinded by your pain, can't see the way, get through the rain... A small but still, resilient voice says hope is very near."
I scream-cry those words sometimes. Scream-crying seems to be a good thing for me. And in those early days of diagnosis, testing and waiting, I often visualized myself running full speed in the streets gasping for air and crying and wailing in the night to just disappear; hoping to run away from it all.