Hurridly, I walked into the infusion room as somehow I was running late that morning. I smiled and nodded as the nurse said, “Good morning! Love the hair! You know to take a seat over there, I’ll be right there.” Then as the infusion nurse headed over so did my research nurse. It was the 12-month blood draw for the clinical study, plus my 3-month CA125. Seven vials of blood plus one throwaway vial. Five of the vials were then wrapped in foil (some have to be light-shielded) and two placed on ice. She then flushed my port and away we went.
Before heading over to the oncologist office afterward, I take up my little space in the hospital and wrap up with a cup of coffee and a low-fat breakfast. Some days I watch the hustle and bustle of the hospital whisk by but that day I just wrapped up in the aroma of my black coffee, chowing down on my breakfast. It really is about the little things.
Back at the oncologist office, I was humbled when my research nurse told me that the clinical study had come to a close. 1,180 women in the study and I AM ONE OF THOSE! My eyes welled up when she told me the news. In the next two years, they will finish gathering data from all of the participants. Then they will analyze the information and publish their findings. My heart literally did back-flips and then forward somersaults at the news! This study was always bigger than just me. Bigger than keeping me in remission, although it’s one of the reasons I entered into the study. This was always about paving a way for women after me.
The Lifestyle Intervention for Ovarian Cancer Enhanced Survival (LIVES) NRG 0225 study is a randomized, controlled trial designed to test the hypothesis that a 24-month lifestyle intervention will significantly increase progression-free survival after oncological therapy for stage II-IV ovarian cancer. Women are randomized 1:1 to a high vegetable and fiber, low-fat diet with daily physical activity goals or an attention control group. Secondary outcomes to be evaluated include quality of life and gastrointestinal health. When completed, LIVES will be the largest behavior-based lifestyle intervention trial conducted among ovarian cancer survivors.
A solid year into the study I can finally say that I have fewer cheat days (although you really can’t cheat the blood work, trust me they know if you cheat) and I have begun on the path to being vegetarian for two of my three meals a day. I am picking more things like black beans, quinoa, brown rice, and expanding into kale burgers. All of those with my 4 servings of vegetables, high fiber, 2 servings of fruit, and low-fat diet. Not all of it am I fond of, the kale burger looked like mashed up baby poop where the kid ate far too many mashed peas, and honestly, it didn’t taste much better. Not that I eat baby poop, it’s just what I would envision it to taste like. I have found a greek yogurt that I love. If you had told me a year ago that I’d be eating any form of yogurt, I would have told you to wash your mouth out with soap. I have come such a long way and have willfully expanded my food palate with some delightful symphonies and some things I’d rather forget.
I’m pretty sure my husband thinks I am on the longest unusual eating ride of my life. I don’t normally make them try everything that I attempt but I do have those moments. Moments where I sit at the table with a stubborn 8-year-old, who eats like a 2-year-old, asking her to take a bite of risotto. Some nights it’s the battle of wills and other nights she eats chicken nuggets. I am on a quest to expand my 8-year-old’s palate, all in due time. Rome wasn’t built overnight. My youngest no doubt is more food cultured than most. The only kid I know who eats straight kale!
Slowly, I am making my way back into being a runner. I promised my oncologist that I would ease back into it. I’ve taken up the couch-to-5k running app. This has been nothing short of painful. Former half marathon runner here, it’s painfully slow. I am moving and that is the most important thing and it’s not a stationary bike. I did pick up a stationary bike at the height of my neuropathy pain in spring to try and get movement in, it is part of the clinical study after all. Talk about boring, yikes. I am just beyond thankful to be back at running, slow pace and all.
The LIVES study wouldn’t be what it is without the numerous surveys to fill out at various points and the 12-month check-in was no exception. As I picked up my No. 2 pencil I began working quickly to shade in my circles, recording my answers. I thought of Kim, she was in the study too before she relapsed. Unfortunately, heaven doesn’t allow phone calls, not even to joke about clinical studies. I couldn’t help but think, “this one is for you, Kim.” This is for all the women who have lost their battle. This is for all the women who don’t even know that they will one day be diagnosed with ovarian cancer.
Thankful is what I feel to this clinical study. Thankful for the relentless push to be healthier, live well, move more, and the opportunity to participate in something much bigger than myself. Research matters. I smile when I think that I am a part of ovarian cancer research! Thankful for researchers, for funding, for brilliant minds who effortlessly work to find a cure. Thankful for the 1,179 other participants.
Raise those cabernet glasses to Ovarian Cancer Research!! It is September after all, National Ovarian Cancer Awareness Month!