The Numbers Game

The most terrifying part of the ovarian cancer diagnosis for me has been the numbers. There are many numbers.

It begins with staging. I knew what stage 4 meant as a number, though not why, and when Steve asked, it was spelled out for us. Stage 4 means it has spread to a second site, in my case from the peritoneal lining to the lining of the right lung. And when it has left the initial site, it is no longer curable. It is treatable. And there are many treatments.

And so the next number you get is life expectancy. I didn’t want that number and had avoided the internet for three days to avoid it. But now, Steve asked and the doctor told us. And it was in years, not months. It was a foothold. And it was just the average.

I looked at Steve and said, “No, for us it’s 5-10 years.” It seemed wrong, hubris, to counter the doctor’s number with the number 10 right there in his office, but from the beginning that was my number. I just added that lower threshold to ease into it.

“I have a patient right now, stage 4 ovarian cancer,” the doctor said, “who has been cancer free for 10 years. But she is an outlier.”

By the time we got home I had internalized a different number than what the doctor said. A better foothold, more cancer-free time than the average. When Steve reminds me that was not the number, I say: “Let’s just let that be the number.” Even in the diagnosis meeting the nurse tells me, as she shows me what the port looks like: “You have so much going for you. Your age. Your overall health. Your support system.” To which I add to the list:  “Your lifestyle. Your faith.”

We can count those on our fingers: five things that make me not average. The average number does not apply to me.

A week later I get my CA 125 number. The doctor has told me that it will be over 30 because it is ovarian cancer. And he has said it might be in the hundreds, or even in the thousands.  He says not to worry about the number because it will go down with treatment and it doesn’t mean anything if it is higher or lower. And yet, when it is “only” in the 200s, we are all happy and celebrate.

I look online for another number. That number is awful, too. Survival rate for 5 years: 47%. The cruelty of it being 3% below 50/50 is not lost on me. But I can work this number, too. I can use my five factors and other numbers to push myself above the average.

I am under 65, so that gives me a better percentage.

I have health. I have already gotten the healthy eating down. Just look at my Chem 10 panel each week, brimming with numbers in the normal range.

I am in good shape.

I am loved.

I push myself into a smaller and smaller part of the wedge. I am way up there, with a great chance of getting to 10 years before another treatment. Many cancer free years. I, too, am an outlier.

When I talk to other survivors, I want to know– “how many years since diagnosis”? Over and over again the number is 5, 7, 10, 12, many of them older than me, and all of them going…

Every week I get more numbers. The white blood cell count drops and drops– seemingly the only treatment-based number fully out of my control. But I get a round of five shots, and the number shoots up into the double digits. I am back at the top of the range in time for my trip to Chicago. When glucose goes up, or potassium down, I adjust my diet. Minerals! Apricots! Fish!

When Round 3 starts off rough, I count down the days until I know I’ll feel better– 3…2…1.

After Round 3 we’ll check the CA 125 again.

And then I find this in the book A Guide to Survivorship for Women Who Have Ovarian Cancer, which I am reading very, very slowly, navigating the information and charts full of numbers. “For some women, namely those with early-stage disease and about 30 percent of women with advanced-stage disease, ovarian cancer is treated once and for all with an aggressive combination of surgery and chemotherapy. The disease is diagnosed, is treated, goes away and never comes back.”