My Fierce, Fighting Friday
Brielle Mastroianni, 38
Albany, New York, United States
“I always told people if they felt uncomfortable with a joke I made, sometime my humor is pretty dark, I would rather laugh than cry and not let intrusive thoughts and/or feelings damper my spirits. The days you wake up feeling good or strong; make those last by any means necessary. Laugh, create, find reasons to smile. Remember, it’s life and you’ve been gifted with a reprieve from the clouds and rain.”
Provide a brief biography to describe your life pre-diagnosis.
My life as a woman of trans[gender] experiences is filled with family who chose me because of who I am, people leaving because of who I am, abuse, domestic violence, homelessness, tears from crying, and tears of laughter. I worked a full-time job for my community at an LGBT Organization and by the end, I ran my own event flawlessly! I had not only my needs met but was even able to obtain some wants. A life like that for a woman like me is not common and I’m blessed for the blessings I was giver… even only if it was for a moment.
Did you have any symptoms leading up to your diagnosis? What led you to see a doctor?
As a woman of trans experiences, I’ve often been rather shy about my cancer diagnosis, but it’s about time I take the narrative back! On Sept 2nd, 2019 I was diagnosed with testicular cancer, but let’s rewind to June of 2019.
I noticed pressure in my left testicle… not something easy for a woman of trans experiences to live through… so I kept quiet, by July of 2019 there was swelling, and the pressure I felt in June started to turn into pain. By August, my left testicle was about the size of a grapefruit. I couldn’t sit, I couldn’t stand, walking was a nightmare. Someone I used to know convinced me to go to the hospital, so they dropped me off sat with me for a while, and left because the dog needed to go for a walk. They did an ultrasound of my scrotum and after hours of waiting in the hospital alone, the doctor came in and confirmed that I had a tumor.
The only way to see if it was malignant or benign was through them doing a radical Orchiectomy, which means removing my left testicular and testing the tumor. I asked the doctor to remove both, and as I was about to say for preventative measures, my doctor assumed I was trying to further my transition. Can we say institutionalized transphobia?
So here are all these doctors and nurses talking about my genitalia and referring as he/him/his pronouns. I don’t think I’ve ever felt LESS feminine than I did at that very moment. The radical orchiectomy was done and I was left with only my right testicle and something that would scar fiercely.
How did hearing the words “you have cancer” make you feel?
Sept 2nd is when I was officially given the diagnosis of stage 2 testicular cancer. Not only was it cancer, but it was stage 2, I was busy hiding it to catch it earlier. First, I thought “I’m not ready to die, then I blamed myself (honestly today [March 4, 2022] I still have moments I grapple with this one).
I thought I smoked too many cigarettes, or this was some kind of punishment the universe was dishing out on me because of poor choices (and I have many of those). I looked at the urologist who misgendered me almost every time he addressed me or spoke of me when he wasn’t in the room, I was irate! I demanded to know why! I demanded him to give me a reason. I was told I didn’t do anything wrong. He suggested I stop taking my testosterone blockers, I refused! I started upping my dosage of estrogen and testosterone blockers to speed up the femininization process.
At that time, I had 3 family members who lived in South Carolina. Two of them were my grandparents at the time of diagnosis they were in their early 80s and my two aunts. By that point, we hadn’t spoken in 8 years. They left when I finally came out openly as a woman of trans experiences.
With hundreds of miles between the only blood family I had, I was basically staring down the barrel of two guns. One was my own mortality and the other was the fact that I was about to face cancer and homelessness; couch surfing. Thanks to my real friends, I was able to not go hungry. They even raised money for me, went food shopping, and made sure my needs were met!
Also, I was linked to this wonderful housing program for people with mental health diagnoses and acute medical illnesses. I have a wonderful nurse who showed me my power, a case manager who listens and empathizes…not just sympathizing! I have a beautiful apartment, food in my fridge, and security while I face the battles ahead.
What is/was the treatment protocol (Western, Eastern, Integrated, or otherwise)?
So there are 3 types of common medical treatments for my type of cancer:
1) Monitoring – Doctors only plan on just keeping an eye on it and making sure it does not grow or spread to any other parts of the body.
2) Radiation – Targeting the specific parts of my body infected by cancer with high doses of radiation that intend to shrink or destroy cancer. The side effects I’ve experienced were headaches, exhaustion, and loss of hair
3) Chemotherapy – This is a reset of sorts for the body to stop producing these cancer cells, by eliminating fast-producing cancer cells. There are all sorts of chemotherapy treatments mine consisted of the VIP chemotherapy regimen, which is a pretty high dosage for cancer consisting of VePesid, Ifosfamide, and Cisplatin. I experienced nausea almost consistently, I was vomiting at least 7x a day, short-term memory loss, ringing in my ears, vision problems, exhaustion walking from one room to another in my quaint Upstate NY apartment, and of course completely full-body hair loss.
Surgery is often accompanied by these treatments. I’ve had 26 radiation treatments (split into two separate treatments). VIP Chemotherapy, stem cell transplant chemotherapy, and by Spring of 2022 a total of 5 major surgeries (radical orchiectomy, abdominal lymph node dissection, removal of a tumor on my brain, and this spring I am having my the top part of my right lung). I’m unsure what it’s called, but I’m meeting with the surgeon at the end of March 2022.
What do you know now that you wish you had known back then?
The lessons you will learn about real strength, the power in having a will to live and make it through tomorrow. Cancer has also opened my eyes to who was really there through one of the most degrading experiences I have lived through. I’ve taught myself patience, acceptance, the importance of self-care, and most importantly, nothing lasts. For every sunny day, there’s a rainy one waiting. More importantly, when the storm is at its worst there can be only sunny days are coming!
How has life changed? What has been your biggest challenge since your diagnosis?
I never saw this coming, I don’t think any of us did. But I sit here writing this and feel empowered!
I am still mourning what was, still have days where I won’t look at myself in the mirror. I still find myself racking my brain to rationalize my experience living with cancer. Why is one of the most treatable and slowest moving cancers occupying my life for over 2 years and has involved 4 different major parts of my body?!
So many questions I may never know the answer to but the lessons I’ve learned have definitely shaped me!
What is some advice you can pass on to someone who has just been diagnosed with cancer?
Scream, cry, rage, and let all the fear out! Don’t forget to tell your care team where you are mentally.
Sometimes getting it out of your chest is actually self-love and self-perseveration. Oh… and don’t let ANYONE’S OPINION OF HOW YOU’RE HANDLING THIS AFFECT YOUR JUDGEMENT! You are an extraordinary being, doing the best you can on this treacherous uphill battle. You ultimately know your body best!
What do you wish people knew more about when supporting a loved one with cancer? Were there any specific things that helped you?
I’ll keep this short. If you haven’t DIRECTLY been through this, please stay in your lane and leave the judgments where they belong… between you and your own head.
What have been the most helpful ways that friends and family have supported you?
No commentary, no platitudes, and no “if I were you’s.” The people who I call family let me say what I needed to. Sometimes it was painful for those who are closest to hear me talk about throwing in the towel sometimes, facing mortality, or simply witnessing the side effects of my radical treatments. If I didn’t have people to hold me together, by allowing me to crack from time to time, I don’t think I’d be here. You angels know who you are!
How have you learn to Thrive since your diagnosis?
I always told people if they felt uncomfortable with a joke I made (and sometimes my humor is pretty dark) I’d rather them laugh than cry. I’d rather not let intrusive thoughts and/or feelings damper my spirits. The days you wake up feeling good or strong, make those last by any means necessary. Laugh, create, find reasons to smile. Remember, it’s life and you’ve been gifted with a reprieve from the clouds and rain.
Is there anything else you would like to share?
You’re still you!
Beneath all the hair loss, vomiting, weight loss, scars, and other side effects; you’re still you! You’re not dead. Are you the same before being diagnosed? No! You’re stronger, the scars tell a story. A story of a warrior making it through this unpredictable life! You’ll have a lot of free time at your disposal, use it to water the new soil you’ve been transferred to… unwillingly!