My name: Kate Pixler
Where I live: Chicago, IL
How far out of active treatment?: Almost five months
I found my tumor by chance in March 2018, and was finally diagnosed in May. I didn't find out/understand my official diagnosis (triple negative Invasive Ductal Carcinoma, Stage II A/B) until I got a second opinion in June. I got all my scans, did fertility preservation, genetic testing, and treatment plan at the second opinion hospital throughout June. (I couldn't even get into an oncologist at the hospital that was in-network until July).
I began chemo at my in-network hospital July 31 after a slight insurance mishap that pushed it a week from my expected start date. I completed four rounds of A/C, 10 rounds of Taxol on December 3, 2018. I had to forgo my final 2 Taxol treatments due to neuropathy in my feet. I had a bilateral skin-sparing mastectomy with sentinel lymph node biopsy and expanders placed January 25, 2019. At that time we confirmed that I had a complete pathological response to chemo (!), and clear nodes. My exchange is scheduled for May 31.
What does the word 'survivor' or 'survivorship' mean to you?
I'm still a little unsure about how I feel about the word 'survivor'. It doesn't feel completely right for me. I think because I constantly have low-level panic that I'm not really out of the woods. Like if I call myself a survivor it's going to come back and bite me in the ass. I don't feel like I survived, I feel like I was traumatized. My risk of recurrence with triple negative drops off significantly after 2 years, so maybe then I'll feel like a survivor. Until then, I'm just trying to get healthy and remain calm.
If you had to describe what survivorship feels like in three words, what would they be?
Overwhelming. Different. Uncomfortable. (But maybe that's just the expanders)
What's one thing you wished people outside of the cancer community understood about survivorship?
I don't think my friends and family fully grasp the worry of recurrence. I've mentioned that there is no cure for Stage IV, but I just don't think they get it that if it comes back, it's stage IV.
What are some things that have helped you during this time?
Everything regarding cancer feels a largely out of my control, so I do my best to focus on what I can control. I CAN control what I put in and on my body, I CAN control how I react to things, I CAN make exercise a priority. Getting in a good workout has been really helpful for me. The progress I'm making in how I feel during a workout now vs. during chemo feels really good. I'm also working on expressing gratitude, specifically to my body parts that have 'wronged me'. Thanking my body for all it's been through, and thanking my developing foobs for showing up. :)
A good calming exercise before bed is going though my body and thanking it. (Marie Kondo style)
Biggest survivorship pet peeve?
Let me count the ways. I am so over people telling me how good I look with short hair. I loved my hair, and it's hard not to harbor some major resentment that cancer/chemo took it from me. I mean, I appreciate the compliment, but when I look in the mirror I still don't see myself. Secondly, comments about having perma-perky boobs, or not having to wear a bra anymore, like it's such a perk (pun intended). I went a lot smaller than I was naturally, so yes, the new foob size is a silver-lining, but I would happily wear tight strapless bras for the rest of my life if I could forgo the whole cancer thing. One last big one—when someone tells me how strong I am, especially if accompanied by a sympathetic look. You gotta do what you gotta do! It didn't and doesn't feel like I was that strong.
What, if anything do you think should be done more in the cancer community in terms of survivorship?
Mental heath is the biggest hurdle for me, and I'd love help figuring out how to find a good therapist. Some kind of resources for what to look for in a therapist, especially after cancer, would make the whole process seem a little less daunting.
What's your favorite swear word?
What's something you haven't said out loud about survivorship that you want to get off your chest?
Am I going to be tired forever? Or does that taper off at some point?
What's your theme song?
Not sure I totally have one, but “Fuck Apologies” by JoJo is really on point for me these days.
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.
One thing I struggle to manage in this stage is guilt. I'm guilty wondering what I did wrong to get cancer in the first place. I should have lost the weight sooner, I shouldn't have drank so much, I shouldn't have worn bras to bed, I shouldn't have worn antiperspirant for so long. I also experience a lot of guilt when it comes to cancer specifically. I feel guilty that I managed treatment relatively well. I had a complete pathological response. The cancer hadn't spread to my nodes. I didn't have any major complications with surgery. I get to be cancer free now. It's privilege so many women don't have the pleasure of. At the same time, so many women don't have the pleasure of breast cancer in the first place. The balance of feeling so unlucky and at the same time so lucky is a real challenge.