What’s it like to experience ovarian cancer as a man? In this episode of Kickin’ It, Nora and Randalynn sit down with Nolan Stuckenschneider, a trans man, drag king and ovarian cancer grad. Nolan shares his ovarian cancer story, the healthcare challenges he faces as a trans man, and steps we can take toward inclusivity. We hope you enjoy this episode of Kickin’ It!
In the latest episode of the Kickin’ It podcast, Nora and Randalynn chat with ovarian cancer grad, Kim Simmons Emory. We discuss Kim’s long road to diagnosis, symptom awareness, Kim’s quest to find her blood sisters to share her cancer history as an adoptee, and much more. We hope you enjoy our chat with Kim!
October 13th is National Metastatic Breast Cancer Day. To honor this day, I am releasing a never before heard conversation between me and Emily Garnett, a beautiful, smart, fierce advocate for the MBC who passed away in March of this year from this unrelenting disease.
Listen to the first episode of the “Lady Ballers” Podcast - hosted by me (Nora McMahon) and Samantha Ainuddin. We kick off ovarian cancer awareness month by discussing our ovarian cancer diagnoses, Sam’s genetic mutation, and a fantastic discussion with Sandy Rollman CEO, Robin Cohen. We hope you enjoy it!
Know the signs!
In autumn of 2014, I began experiencing some very subtle, very gradual changes in my body. It started with me feeling tired and run down, but I had chalked up the fatigue as related to starting a new, demanding work schedule. I noticed that some mornings, when I woke up, I was slightly nauseous. One afternoon, while sitting at my desk at work, I told my co-worker that I felt an odd twinge in my lower abdomen, and it felt “as if my spleen was enlarged”.
“Maybe you should get that checked out?”, she replied.
I brushed it off and went about my busy work schedule.
As the months passed, I noticed that I had to pee more often. I began to feel bloated all of the time. I was constipated, and started taking fiber supplements & probiotics. I ate prunes and drank lots of water, but would only find mild occasional relief in the form of “pencil poop”. As winter set in, I grew more fatigued, to the point that I would need to find a quiet place to nap during my lunch breaks at work. Over the months, on two separate occasions, I had a very sudden, very urgent need to pee. One evening, I realized that the only thing that I ate during the day was 4 tablespoons of oatmeal and a few bites of a salad and I still felt full at 10 pm. My pants later stopped fitting me around the waist.
Ovarian cancer is no fun.
Pencil poop is no fun.
Mr. Hankey is TOTALLY fun.
All of theses symptoms were gradual and happened over the course of about 5 months. At the end of December 2014 my lower abdomen started to extend out, as if there was a small balloon inside of it. By the end of January, it was much more noticeable and I was constantly uncomfortable. Sensing something was wrong, I made an appointment with my doctor.
Thankfully, my doctor listened to me, and over the course of another month and a half I was fast tracked through ultrasounds, CT Scans and referred to a gyn-oncologist. The CT scan results showed that I had a mass (actually two) parked out in my lower abdomen. They were not able to locate my ovaries in either the ultrasounds or CT Scans. During my initial consultation with my gyn-oncologist, I was informed that it was very likely that I had ovarian cancer. I was terrified.
On March 17th, 2015 I checked in to a hospital for the surgical removal of the masses. My gyn-onc had informed me that if the masses were benign, then the surgery should only take about 2 hours. If they were cancerous, then it would probably take much longer. My husband parked out in the waiting room and watched the clock tick by. As the the 2 hour mark extended into 6 hours, he tried to prepare himself for the worst.
Turns out, I had ovarian cancer. Two tumor removals (one the size of a grapefruit and the other the size of a volleyball- yes you read that correctly), a de-bulking and a full hysterectomy and oophorectomy later, I found out that I somehow skirted the odds and my cancer was staged at Stage 1c3.
I am *incredibly* fortunate. After a very long and very rough 2015, I am alive today and able to warn you about the signs and symptoms of ovarian cancer, and what to do if you suspect you or a woman you love might have it.
First, here are some numbers:
Now, for the signs and symptoms:
If you or any woman you love is experiencing these symptoms for more than 2 weeks, please encourage them to get to a doctor ASAP. Make sure you are HEARD by your doctors. *YOU ARE YOUR BEST MEDICAL ADVOCATE*. If you have had breast cancer, or have a family history of breast cancer or colon cancer, you are at a higher risk for developing ovarian cancer. Women with the BRCA genetic mutation have up to a 70% chance of developing ovarian cancer.
If you suspect that you have ovarian cancer, or if it runs in your family, your doctor can perform a blood test called the CA-125. The CA-125 is a simple blood test that measures the cancer antigen protein in your blood and is used to monitor early signs of ovarian cancer. The CA-125 is not an absolute test, but can help to support doctor's suspicions. If you are suspected to have ovarian cancer, make sure to consult with a gyn-oncologist, as they are the best prepared to monitor and know the specifics of what to look for during surgery.
Please take note, spread the awareness and share the symptoms. It could literally save a woman’s life. There are no early detection tests, and many doctors have been known to misdiagnose ovarian cancer as IBS, chronic fatigue or Epstein Barr virus. ***THE PAP WILL NOT DETECT OVARIAN CANCER***
If you have any questions, leave them in the comments below and I’ll try my best to answer them!
This was the survivor story speech Aniela gave in honor of her mother for the Gilda's Club of SoFL SNL Fundraiser. They raised the $20,000 goal in 20 minutes.
Warrior. Fighter. Hero. Courage. Survivor.
These are just a few terms that may be familiar if you've ever been diagnosed with cancer. These are all wonderful words, and are usually used by people who want to support you through an incredibly difficult time in your life- people who want to honor your struggle.
I still vividly remember the first time someone referred to me as a cancer "survivor." It gave me pause- I had a visceral reaction, where I had to stop myself from revealing my cringing face. The term fell flat for me. At that moment, I wasn't sure why.
Surely, there is some truth in the term "cancer survivor"- most of us who have come through a diagnosis are keenly aware of our avoidance of death and the incredibly challenging circumstances towards becoming healthier. I understand why so many use the moniker with pride. If the name "survivor" is one that makes you feel proud and empowered, by all means-kudos to you, keep rockin' that term.
As I reflected on my reaction to the term, I was able to determine why "survivor" didn't resonate with me. Within the world of cancer, so much of the rhetoric surrounding the disease is couched in war and battle terminology. "Fight like a girl", "Cancer Warrior", "Kick cancer's ass" "Wage a war on cancer" are some popular examples. For those people who have passed on from the disease, we often read they have "lost their battle", or "lost their fight" with cancer. Is this supposed to mean they didn't "fight" hard enough? Does that truly honor their lives and their struggle?
Sure, some of us survive cancer, but I'm striving for more than survival. I'm striving to live out loud, to create, to learn more, love more, grow more, explore more, and share more during my time on earth, until I pass on and end up "studying abroad".
I never looked at my own cancer diagnosis through the war lens. I viewed it as some cells that went haywire in my lower abdomen (GO HOME, DNA. YOU'RE DRUNK.) - that my body needed a lot of help healing through surgery and chemo and teams of doctors and nurses and a comprehensive plan to get it back on track to healing itself. It was incredibly hard, but I learned much more about cancer and my body, about empathy and sympathy, about physical, mental and emotional strength, about love and support, about grief and pain, as well as joy and healing. I didn't just survive cancer. I got schooled by cancer, and then I graduated from it.
I love the power of words. I love trying to find the most appropriate, descriptive words to communicate emotions and experiences. So when Aniela and I asked each other the question, "What's an empowering term to call someone who has lived through a cancer diagnosis?" we thought long and hard about our choice of words.
Cancer Grad.
We hope that if you are getting schooled by cancer, that you graduate from it with honors.
The first time someone called me a “Cancer Survivor” I recoiled in horror. It was a badge of honor that I was supposed to wear proudly, but instead it gave me the willies. “Survivor” signified only two options; being alive or being dead. My mother was a Skin Cancer and Breast Cancer “Survivor” but Ovarian Cancer revoked her title the day she passed away.
Many patients feel connected to the term, they feel like “WARRIORS”; which they are. In no way am I trying to diminish that. For me, the term didn’t fit and I had to find a new way to cope with my cancer diagnosis.
The question became, “What else can you call a Cancer Patient when they finish treatment?” My fellow cancer comrade, Nora, and I came up with “Graduate.” We are “Cancer Graduates.”
I spent the next 6 months refining the term. Why Cancer Graduate?
For me, there is a moment of recognition when talking to someone and finding out they also went through a cancer diagnosis. Instantly, we connect. It is the same moment of recognition when you find out someone went to the same university. “You went to CancerU, too? What campus?”
You ask what major they had. “I majored in Breasts, you majored in Prostate! How crazy.”
We reminisce about the parties where we had too many cocktails and were throwing up.
We compare courses; surgery, chemo, radiation.
There is a camaraderie…an understanding.
When we graduate some people become Alumni Donors-going to the games, sporting the team t-shirts and bumper stickers-while others move on only mentioning it in passing when they meet fellow alumni.
Imagine what the cancer experience would be like if we walked in with that same attitude as going away to college. Florida State University had a huge impact on my life, shaping who I am today, but it doesn’t define me. We enter college with the main goal of learning and we ask ourselves, “How can I use this knowledge to help the world, to help myself, and to change the future?”
I knew college was going to be difficult and expensive. I struggled but did it with an open heart and excitement. I found where to have fun, made life long friends, gained 15 lbs and cut my hair.
Sometimes when we think we are done with school, life happens and we have to go back for a Masters or PhD.
We enter cancer knowing it is going to be a struggle but at the same time curious about what we will learn. As Viktor Frankl said, “When we are no longer able to change a situation, we are challenged to change ourselves” and “between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom.”
Going to WAR carries a heavy emotional burden filled with images of death and destruction. Fear and Anger are powerful ways to propel oneself to action but over time can become overwhelming and difficult to bear. By changing our view of cancer from a war to be waged to an educational experience, it allows us to change our feelings of fighting to perseverance, fear to curiosity, pain to growth. It becomes lighter.
I am proud to be a “Cancer Graduate” and I can’t wait to share what I learned with the world.
What will you do with your degree?
Love,
