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.
How about if someone told you it might improve your sex life after breast cancer treatments?
A few years ago, I heard about the MonaLisa Touch® Laser Treatment and remember thinking judgingly, “How desperate would someone have to be to voluntarily let your vagina be attacked with a laser?”
I soon found out.
You are Going to Get a Tattoo
The goal of TARGETED radiation is to get as much of your cancer site as possible and as LITTLE of the rest of you. There is a lot of geometry involved looking for the best angles. They scan your body so they know where everything is, especially your heart and lungs. You REALLY don't want to irradiate your heart. They measure everything down to the millimeter and they tattoo you so that you are in the EXACT SAME position with every treatment. After they get you into the perfect position, they tattoo you with six tiny dots so that you are precisely lined up every time. The tattoos are tiny, like little blue freckles. Since I did my “dress rehearsal” right after my last inflation, it was hard to get into position. My tattoos for the vertical line up aren’t in a straight line in relation to my body, so now every treatment, I’m a little crooked on the table. In that “dress rehearsal” appointment, get as comfortable as possible. Wiggle around a little bit and try to find a good position; you will be lying that way for a month or two.
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.
MOUTH SORES...they are like a portal to Chemo HELL. What if they could not only be treated but PREVENTED? Oil Pulling is the magical answer, plus its cheap and easy.
My final chemo treatment was April 11, 2015, and this has been the one tip I share the most. Oil Pulling has made me one of those overly excited people pushing unsolicited holistic remedies onto unsuspecting cancer patients (I know...ugh), but this one actually works and made it possible for me to eat during chemo. Plus, it isn't connected to a mid-level marketing product.
Prior to chemo, I couldn't justify the hassle of oil pulling. My random attempts couldn't “proved” that it accomplished more than slowly whitening my teeth, but during chemo it became my secret weapon against dreaded mouth sores.
“Oil pulling is an ancient Ayurvedic technique that involves putting oil in your mouth for 20 minutes every day in order to draw out toxins from the body. ”
Sounds like a party, right?
Christmas morning, 2014, my first mouth sore broke open one week after my first chemo treatment--what a gift! My internet chemo-comrades informed me that I could get my doctor to prescribe “Magic Mouthwash”, but they warned that it tasted like crap and and would make my mouth numb. Out of simple laziness to avoid another trip to the pharmacy, I decided to try oil pulling again. By the next day my mouth was HEALED.
From that moment on, every morning, the first thing I would do--after peeing, of course-- was put a spoonful of coconut oil in mouth. A year later, I am still doing it. With four months of intense chemo, the first mouth sore was my ONLY mouth sore. Oil pulling also saved me THOUSANDS of dollars in dental work after chemo. Something no one mentions during treatment is that all of those sores wreak havoc on your mouth, causing damage that could result in gum disease, cavities, and tooth loss. I only needed two preventative fillings. Thank you, Oil Pulling!
I prefer coconut oil but you can also use sesame or sunflower. Amazon sells “pure, unrefined, cold pressed, 100% organic extra virgin coconut oil” (with that many adjectives it must be good) in a 54oz jug for about $17.
Share on Pinterest
Dr. Mehta, my integrative medicine doctor at UM Sylvester Comprehensive Cancer Center, suggested I add several drops of clove oil to my oil pulling. Clove oil and coconut oil both have antiseptic properties and the clove oil has a huge list of added benefits. Now, I also add a few drops of organic peppermint oil to give me extra fresh breath.
Why does oil pulling work? I came to find out it's not magic. Dr. Mehta explained that during chemo the cells are exploding and leaving their toxic waste floating in your body. By drinking water you flush the water soluble parts out but the fat soluble bits are stuck. By oil pulling, you give a place for those fat soluble toxins to go and then you spit them out. Abracadabra, the magic of our bodies.
First thing in the morning, before drinking water or brushing your teeth, put a teaspoon of coconut oil with a few drops of clove and peppermint oil in your mouth and gently swish for 20 minutes. If you are finding that your mouth is cramping or you are gagging, start with less oil and less time. Then do your morning ritual; use the bathroom, make the bed, shower, feed the cats, meditate, etc. 20 minutes is the optimum time to get the full benefits. It's long enough to break through the mucus membrane and short enough so the toxins don't seep back in. Spit the oil into the TRASH (you don’t want to clog your drains). Then rinse with salt water as an added antiseptic while in chemo. DONE.
As an added bonus, you will have a bright white smile to go with your shiny bald head.
Game of Oil Pulling
By the end of Chemo, it was an all out battle between oil pulling and the chemo drugs. My mouth felt fuzzy, food tasted funny, and I could feel that the mouth sores were clawing to come out. Chemo compounds and oil pulling can only do so much, but if you are diligent with oil pulling you can hold them back as long as possible.
Love,
This is something that worked for me, but please talk to your doctor. Also, check to see if your cancer facility has an integrative medicine doctor. They are a wonderful resource for adding holistic medicines to your standard medicine. *DO NOT discontinue your actual medicine because of what you read here.
