10 Things I Learned After 10 Years With Ovarian Cancer

My birthday was January 20. Yay, me. But January 20 and the entire month of January are a mixed bag of emotions for me — especially this year. I received my stage 4 ovarian cancer diagnosis on Jan. 16, 2016. I entered the hospital to have my port implanted and start chemotherapy on January 19. Due to a series of delays (portents for the days to come) my chemotherapy didn’t start until the evening. In fact, I was still hooked up to the IV after midnight on January 20, my 58^thbirthday.

So here I am still alive ten years later on my 68^th birthday. It staggers me when I realize I’ve been in continuous treatment for a decade. Historically, survival rates were low for women diagnosed with stage 4 ovarian cancer.

Not only am I the author of more than 35 novels, and grandmother to four grandchildren — two of whom were born after my diagnosis — but I’ve also been celebrating a complete response to a phase 1 clinical trial drug that has kept my cancer at bay for three years.

I’m blessed, so I try hard not to complain about the side effects, the cost, the multitude of appointments, the hours spent in waiting rooms, the scans, and the procedures. However, I do feel I’m allowed to share what I wish my younger self had known when I received my diagnosis. Counting down to number one, here are my lessons learned:

10. The hair really will grow back. My hair fell out twice — so far. Both times it grew back. It sucks, believe me, I’d never say otherwise. But, in the bigger scheme of things, it’s not so important. Embrace the scarves, the cute beanies, the stylish hats, and/or embrace the bald. I received a ton of compliments for a black beanie covered with black sequins. One lady called it “the party” on my head.

9. Palliative care and hospice are not the same thing. When a doctor recommends palliative care, he simply wants his patient to have all the medical care available to him. Social worker, pain specialist, nutritionist, whatever is needed to treat the patient holistically. Hospice is important, too, but its purpose is different. Hospice is considered when a patient has entered a stage when treatment may no longer be helpful. It’s typically considered when a patient isn’t expected to live more than six months. The focus is on quality of life and keeping the patient comfortable.

8. Clinical trials are not a last resort. My first oncologist retired after keeping me alive for five years. She referred me to an oncologist who has founded phase 1 clinical trial clinics across the United States as well as abroad. He’s been my oncologist for five years now. He assures me regularly that there are still many options to treat my cancer if my current clinical trial drug loses its effectiveness. It’s mind-boggling to see how many new drugs have been approved or are in the late stages of trials for ovarian cancer alone. Targeted therapy, immunotherapy, and a plethora of other treatments await cancer patients who choose this path.

7. Friends and family want to help. But they don’t always know what you need. It’s different for everyone. Maybe you want someone to clean your house while you’re in the infusion room instead of hanging out with you. Or do a few loads of laundry. Or get groceries. Or walk the dogs. Or bring your family a meal. The important thing to remember is that people often feel as helpless as you do. They don’t know what to say or do. Speaking up helps them too.

6. Get your medical questions answered by medical experts. I almost made this number one in this age of search-engine AI experts, social media, fake news and everyone’s-an-expert. I had quite a few experiences in the early days of treatment. You shouldn’t eat sugar. You should use this kind of cane (my cancer caused me to lose my mobility as a special double-whammy just for me.) Try whale guts. Try a medicine for horses. I learned to smile, nod, and say politely, “I rely on my doctor’s advice for my treatment.” After all, oncologists are the ones with the medical degrees.

5. Advocate for yourself. You are a member of your medical team. If something doesn’t feel right, speak up. If you don’t feel comfortable with a course of action, speak up. Ask questions. Your oncologist can’t read your mind. If he doesn’t take time to listen to you and your concerns, he may not be the right doctor for you.

4. Be kind to the person standing in front of you. Ninety-five percent of the time, whatever frustration you’re experiencing isn’t their fault. When you’ve been waiting “forever” in the doctor’s waiting room, when the lab work “still” hasn’t been processed, when the doctor’s orders “still” aren’t ready, when the prescription “still” hasn’t been filled, don’t take it out on the messenger. It won’t help. In fact, it’ll make it worse because you’ll feel guilty, and the other person isn’t likely to go the extra mile for a grumpy old woman (that’s me).

3. Count your blessings. Be positive. Not that toxic positivity that has you smiling while a phlebotomist pokes you for the third time and still can’t draw blood. When you’re at your wit’s end and about to explode, take a breath, and literally count your blessings. Out loud if you need to. I came to realize they outweighed the negative nellies running on the hamster wheel inside my head, taking over every overthinking conversation I had with myself. I have a loving family, a church family, my faith, a blooming writing career, good, affordable insurance, some of the best medical care in the world, and the list goes on. Everyone’s list looks different, but the blessings are there.

2. Family comes first. I always knew that, but when I worked full-time in a high-pressure, event-heavy public relations job, I let work take precedence too many times. We can’t get back time spent away from loved ones. A potentially terminal diagnosis does an amazing job of teaching us to prioritize. Slow down. Enjoy the ice cream cone. Stick your toes in the ocean. Feed the koi. Play make-believe carwash with a toddler. Hold his hand because he asks you to. Be present.

1. Like my grandma used to say, quite piddling around, time’s a’wastin’. This sounds like exactly the opposite of number 2, but it’s not, I promise. Ask yourself what you want to accomplish in this life and do it. Write the book. Run for office. Get a college degree. Grow vegetables. Volunteer. You’ll have days when you feel bad. You’ll have days when you don’t want to get out of bed. If your doctor says it’s okay, do it anyway. Value every minute of every hour of every day by using it well. For me it’s writing books. Lots of books. That and spending time with my family. (See number two). It’s about figuring out what’s important to you and doing that relentlessly. Don’t let a cancer diagnosis hold you back, let it propel you forward.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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