Kelly Irvin is a multi-published novelist and former newspaper reporter who worked in public relations for more than 20 years. She retired from her day job in 2016 after being diagnosed with primary lateral sclerosis, a degenerative motor neuron disease, and stage 4 ovarian cancer. She spends her days writing and loving her family.
A second ovarian cancer recurrence in three years prompted this review of lessons learned. If I could go back three and a half years and give advice to my newly diagnosed self, what would I say?
This morning, I start chemotherapy for the third time in three and a half years. "Three’s a charm" doesn’t apply in this instance.
Women with stage 4 ovarian cancer live with the fear of recurrence. It’s not a question of if, but when. When it does happen, strange as it sounds, it’s almost a relief. Certainly anticlimactic. We’re old hands at this. If I could go back three and a half years and give advice to my newly diagnosed self, what would I say? Here’s the letter I wrote to my newbie-cancer-ninja self:
Get a grip on the fear and depression sooner rather than later. Easier said than done, I know, but worrying about tomorrow will only spoil today. Don’t let that happen. Every day you feel decent is a gift— don’t waste it. Work diligently to change the conversation in your head from worst-case scenario to a focus on blessings.
Advocate for yourself. Be an active member of your care team. That includes researching the treatments your doctor recommends and asking questions about them. Why chemo only? Why not radiation? Why this drug regimen and not that one? This is your body and these decisions are critical to the outcome. A good oncologist will welcome your participation and you’ll feel as if you have a little control in an out-of-control situation.
Stand your ground. Stand up for yourself. In three years, I’ve learned to speak up with doctors, nurses, schedulers, insurance representatives and pharmacists. If you bite your tongue and don’t ask the question or argue the point, you’ll go home and stew over it for days. Sometimes, it’s the only way to make things happen and make them happen on your timeline. Health care providers are incredibly busy. Frequently the only way to get what you need is to be the squeaky wheel, the pushy broad, the irritating lady who called four times, and simply refuse to give up until you get an answer and get action. This isn’t about being liked. It’s about your health.
Don’t endure poor customer service because “that’s just the way it is.” I spent more than 20 years in public relations. I understand good customer service. We are patients, but we’re also customers. I offered critiques to my cancer clinic regarding long waits, freezing temperatures, and unresponsive staff members via emails, through the website and even writing letters. I’m tough, so when I was brought to tears by frustration and runaround at the clinic, I knew I’d hit my limit. I offered constructive, if strongly-worded, feedback. I’m sure the improvements I’ve seen are the result of many other factors, but I believe my efforts have made a difference. Someone listened. And if nothing else, I felt better.
Think more about others and less about yourself. At times I’ve felt as if I should bring a sleeping bag to the clinic, such are the endless waits. Instead of wallowing in frustration at the hours slipping away, look around. Start a conversation with someone who looks sad or lost. Offer a smile and a simple “how are you doing today?”
Doctor K is right when she says new tools for treating ovarian cancer are being approved regularly. Have hope. But also be realistic. Those new drugs come with exorbitant price tags. When your disability benefits are approved, weigh the pros and cons regarding Medicare. Medicare’s prescription plan has no out-of-pocket cap. This means using that “breakthrough” drug that may increase your progression-free period will require you to have almost $12,000 set aside for your co-pay for one year of the drug.
No one could have been more shocked and surprised than me that drug companies are forbidden by federal law to cover co-pays for Medicare recipients. Be prepared to deal with the disappointment and anger.
Losing your hair sucks. I haven’t found anything that anyone has said to me that helps with this fact. It simply sucks. It grows back, so my job through each recurrence is to look forward to that day.
Start leaning into your faith immediately. Recognize that you are being honed. This isn’t for a season. It’s for the rest of your life, however long that is. Become your best self, a person who shines with light in a dark world.
When the day comes and you’re N.E.D. again, don’t waste those days worrying about the next recurrence. Thank God for the blessing of each day. Make each day count. Do something worthy of the time you’ve been given. Use your talents to make a lasting contribution. Not everyone is given the gift of N.E.D. Never forget that. If you’re blessed with treatment-free days, make the most of them. Enjoy the sunshine on your face, watch the birds and squirrels play in the yard, enjoy the sound of the rain on the roof. Kiss your spouse. Hug your kids. Play with your grandkids. Eat your favorite dessert.
Live and live well.