Double Major: Ovarian and Breast Cancer Grad- Amanda
Name: Amanda Nelson
Age at Enrollment: 41 & 45
Majors: Ovarian cancer stage 3C in 2012, triple negative breast cancer stage 2 in 2016, I'm BRCA2
What were the primary symptoms you experienced prior to diagnosis? I had endometriosis and a large ovarian cyst so those masked any symptoms. I felt bloated all the time and had to urinate frequently, but I assumed it was the cyst pressing on my bladder.
What symptom(s) lead you to go to the doctor? I was being monitored for an ovarian cyst for almost 2 years. It wouldn't shrink or dissolve and my gynecologist just wanted to keep monitoring it, although I kept asking for him to surgically remove it. I was in a lot of discomfort or outright pain a lot. My family doctor urged me to go back to the gynecologist and demand that he remove it because it was starting to fill with fluid. I clearly remember the gynecologist saying that there was no reason to remove the cyst because he didn't think was cancerous or anything. That freaked me out because i never considered that it could be cancerous. My family doctor gave me the strength to push for the surgery harder, he consented, and through the pathology found cancerous cells.
Ovarian: hysterectomy and chemo
Breast: bilateral mastectomy, chemo and radiation
What was your hardest moment (or moments) and how did you you get through it/them? Telling my husband and parents, if there was a way to spare them having to go through this with me I would have, but of course they were my biggest supporters once they knew. We arrange to have my chemo Wednesdays, which was my husbands day off, and he made it fun for me. He downloaded funny shows on our ipad and got a splitter for headphones so we could watch together. We watched a lot of Arrested Development, Workaholics and It's Always Sunny in Philadelphia, we sometimes laughed so hard that we were asked to keep it down. Sometimes my best friend or my parents were able to sub in, so I was never alone. Finding my sense of humor through it all was the only way.
Any helpful (tangible) tips or tricks you discovered for dealing with your symptoms and/or cancer? I asked tons of questions and told my doctors and chemo nurses about every little symptom, I was probably a pain the ass but it really helped that they could switch my meds if needed. I've had over 30 rounds of chemo and I've never vomited!
As for the emotional/mental part I tried to have a positive outlook, but I don't think it's realistic to do that all the time. I allowed myself the occasional pity party by feeling sorry for myself and would have a good cry to get it all out at least once a week.
What did you know about ovarian cancer prior to your diagnosis? Absolutely nothing, I had never given it a thought. I was concerned about cancer on both sides of my family (breast, prostate and colon), but I was the first with ovarian. Since finding out that I was BRCA2 and letting my extended family know I learned that my grandmother's sister had it.
What do you wish more people knew or understood about Ovarian Cancer? I wish people knew about the symptoms, the seriousness of the disease and overall just felt more comfortable talking about ovaries and gyn stuff in general. I've heard so many stories of women not truly knowing their family history because their relatives called it 'lady cancer' or something else. After my second diagnosis my genetic mutation was upgraded from a "variant of unknown significance" to BRCA2. I found that almost all the information was geared towards breast cancer. I also found that there was so many more resources for breast cancer patients, ovarian cancer needs more!
How did your family and friends respond? I had a core support group that I relied on and they were wonderful, my husband and best friend were amazing! I'm actually closer to my parents and was able to get a lot of advice from them since they're both survivors. A few people disappeared right away or slowly seemed to forget about me, which was hurtful because its such a lonely, isolating experience already. Thankfully I had my team to make up for it.
How did/do you find joy during this experience? I had just adopted a second dog, so he was a great distraction. Taking the pair to the off leash park and watching them play got me out of the house pretty much every day. It was great to get a little exercise, fresh air and not think about my problems. I also found that my dog Monkey is a great listener, lol. I've always been a huge music buff so that was really therapeutic for me.
After treatment I began to volunteer with Ovarian Cancer Canada and have my own team, Amanda's Avengers, in their Walk of Hope which helps me find a bigger sense of purpose and helps me to connect to my teal sisters.
Did you learn anything about yourself? If so, what was it? I'm really strong and brave when I need to be! I took on the Winnie the Pooh quote "you're braver than you believe, and stronger than you seem, and smarter than you think" as my mantra. As an example I used to pass out or get light headed getting a blood test. Needles freaked me out! Slowly I got used to the IV's and constant blood tests and was even able to give myself neupogen and neulasta injections. I often used cancer as my motivator when I'm afraid to do something, I think to myself if I could get through that I can do pretty much anything!
I also learned that I have a quest for knowledge and that I like to be in control. I had to give up a lot of control but I could steer that energy into learning about my disease so that I understood it and treatment more.