By : Samantha Gonzales-Russell, 37, Gynecological Cancer
Trigger warning: This submission includes descriptions of medical trauma. Please take care of you.
“You’ll just have a tube sticking out of your back, and it drains fluid from your kidney,”the specialist explains as he goes over my imaging and gets me ready for another procedure.
“Just?”
As if I hadn’t already been through enough. I had a hysterectomy at 27. Two years later, I’d been misdiagnosed and dismissed for months only to find out that the cancer came back. Countless surgeries later, chemo, radiation, immunotherapy. I can’t do this anymore. I can’t take the poking, the prodding, the sucking it up just to feel broken down to do all over again. Maybe it’s just a tiny tube, but it feels like the last straw to break the camel’s back and I’m the camel.
Recurrence is an unfathomable weight to carry. It was actually my worst fear realized and it happened twice. You work so hard and sacrifice everything, just for it to all come crashing down and feel like it was for nothing. “Why me?” became so deeply embedded in my mind that it consumed nearly every thought during and after cancer. I had to actively work against it. I even got professional help. It plagued me well into my survivorship. Six years post remission, and it’ll still sneak up in waves of rage and sorrow.
I just rang the proverbial bell. The one that symbolizes that you’re all done. I finished chemo, and the radiation was finally over. There’s no procedures or surgeries on the calendar. And maybe most importantly, I have a clean scan. Now is my time to heal! THIS is what I’ve been working so hard for.
About three months later, I see blood where I really shouldn’t and then comes a pain that’s all too familiar. And there’s that crushing weight again. I take a deep breath. The second oncologist I see shrugs his shoulders and hands me over the pamphlet. “I’m sorry, there’s not really much else we can do.” It has photos of a family holding their grandfather in a warm embrace. Hospice? I look at my husband, Jake. I’m pretty sure we’re reflecting the same face at each other, and neither of us have words.
“We’ll remove everything, and you’ll have two permanent ostomy bags.” This is it. There’s a 50% chance this works and gets rid of the cancer and a 50% chance that it doesn’t. I say it’s worth a shot. After endless phone calls to hospitals, doctor’s offices and insurance all over the country, we end up here in LA and I’m being wheeled in to surgery for a total pelvic exenteration and reconstruction. I’ll be unconscious for 14 hours and I’m thinking enough thoughts to make up for the lost time. “Will I survive this?” “If I do, what kind of life will I live?” “Is it worth it?”
Six years later, Jake and I blow out the little six candles on the dutch apple pie. I’m working on a session I’m giving on women’s health advocacy and I’m so fulfilled getting to meet other survivors. I’m actually surprised I have the time or energy as I search our calendars for some free space. That meeting will have to go between hyperbaric oxygen therapy and physical therapy later that day. I think about how grateful I am and sigh, and before I even finish there’s a phone call from my doctor’s office. They can’t help me with my medical supplies prescription and in an instant that sigh of satisfaction turns into tears of frustration. *Survivor mode activated.* I literally can’t live without my supplies. Instead of an afternoon filled with joy and excitement, it’s filled with phone calls, MyChart notifications, EOBs, and my emotions all over the place.
No one will ever say it sucks and it’s unfair, but I will. They want to see me thrive, but how can I thrive in a system that doesn’t even let me live? Every morning I wake up and roll out of bed, I know I’ve made it here for many reasons and you should too. Despite the dismissals, the minimizing, the endless hoops and hurdles, I keep going. SPITE being the key word because you can try to shrink me, try to quell my voice, and try to crush my spirit, but the fight never ends on all sides. As long as I’m here, I’m relentless. You won’t decide for me. I decide.