Advocate Spotlight: Ruth Ann
AdvancedOvarianCancer.net shares the stories and experiences of people living with ovarian cancer. We are highlighting the story of our advocate Ruth Ann who was diagnosed with stage 2c BRCA1-positive ovarian cancer in 2013. Following Ruth Ann's diagnosis, she made it her mission to support and give back to other women living with similar diagnoses.
This is Ruth Ann's story...
Ruth Ann's diagnosis story
In June of 2013, I started with a continuous discharge, painful intercourse, and swollen ankles and feet. As the summer progressed my stomach became distended (to the point that I purchased a brand new summer wardrobe) and had continuous heartburn. I will be honest I chalked it up to early menopause. And I felt my life was “too busy” to see a doctor”.
The third week of August I had an excruciating stomach ache that the next day I walked myself into the closest urgent care. From that visit three days later I found myself admitted to Smilow Cancer Hospital in New Haven, CT. Within a few days of being there, I had my first surgery and everything started from that point on! I was diagnosed with stage 2c and BRCA1.
Looking back I definitely knew something was wrong but didn’t take the time to put my health first.
Treatment plans and experiences
I have had two recurrences since my initial diagnosis. My first diagnosis involved a hysterectomy, tumor, and a few lymph nodes removed. I took six cycles of Carbo/Taxol. A year and a half later had a debulking and bowel repair and went on to Carbo/Gemzar and Avastin for close to 16 months.
And my second recurrence I had a debulking surgery and was put on a parp inhibitor, Lynparza (or Olaparib), and have now been on that for 3 and a half years with no sign of disease.
Who to reach out to for support
Use the chemo nurses as support. Chemo nurses do infusions day in and day out. They know anti-nausea tricks, they know how to handle aches and pains, and they are on the ground running all the time for us. I was told to open my arms and listen to them and let them guide me through my chemo journey. They are not getting rich off taking care of us, they are truly doing this job because they passionately care. I was told they would be very special folks in my journey and I have to say that I truly agree with that!
Remember to pritorize yourself
Stop. Take a deep breath. And don’t push away your loved ones (whether they are family, friends, etc.) You may need to figure out what you need from them, but they are only trying to help you because they love and care about you. And until a person has gone through treatment themselves, the person doesn’t always know what the patient needs. So if you can verbalize it, even if it is that you don’t want to be alone, have them sit on the couch and watch a movie with you (though you may sleep through most of it...), let them cook or shop for you, and if you have little ones, pets or anyone that needs your assistance let them help you. For many, they are hurting for you and only want to be there to support you and while their offers are gracious and coming from a good spot, many don’t know what would be the best way they can be helpful to you! And you don’t have to accept all offers at one time, stagger them (everyone doesn’t necessarily need 5 trays of chicken parmesan in their freezer), and just don’t forget to breathe...
Why advocacy matters
When I was first in the hospital prior to my first surgery a wonderful woman came to visit me. (She was actually receiving her chemo in the hospital as she needed to be surveilled as she had terribly reactions to her chemo treatments.) It ended up that I had babysat for her years earlier and thought I had seen her over the years, I had not run into her since she had been diagnosed with ovarian cancer. She spent time with me that day and then came to sit with me on my first day of chemo. The nurses all knew her and she was so comforting not only to me but to other women in the clinic. I knew from that moment on, I would make it my mission to be available for other patients.
From that point on slowly I made sure every time I was in chemo I would walk around with my infusion and sit and visit with all the other women getting treatment. I knew from that moment on, that since I was “selected” for this disease then it was my personal job to support and give back to other women with similar diagnoses.
Over the last 8 years, I have had many positive interactions (and sometimes not so great) that by being an advocate I feel I have so much to share. I feel that I can be of help to other patients and I hope that some of the things I learned the hard way, I can pass onto someone else so I can help to provide resources or personal tools to help navigate through their journey and make their experiences a little easier. I know firsthand how important it is to have support from others who have been through it and want to make sure that I can be always available for others in their time of need, or to be there to share in their successes during and after their cancer journeys!
Something you may not know about me
I am very shy. Many don’t believe that as I am always speaking in groups and love to entertain. But, if I find myself in a new social setting, or sometimes in a work setting, I find it very uncomfortable to break out of my shell. I’m not very good at small talk and when possible I will try to do my homework on who will be at the event, (party, etc.) in advance so that I have created some conversation starters in advance. I will usually find a way to be excused soon after I arrive, and many times I will have an excuse pre-prepared so it will make my escape easier. But once I am comfortable it is hard to get rid of me :)
I was diagnosed with...