Rather than revisiting the ghosts of cancer treatments past, I’m focused on using what I’ve learned in three years of active treatment and maintenance for incurable, metastatic cancer.
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.
My three-year cancerversary is quickly approaching. On Jan. 13, 2016, I received a diagnosis of stage 4 ovarian cancer. This isn’t the sort of anniversary a person celebrates, nor is it to be a sad occasion. After all, I’m still here to acknowledge it.
Rather than revisiting the ghosts of cancer treatments past, I’m focused on using what I’ve learned in three years of active treatment and maintenance for incurable, metastatic cancer. I’m hopeful these thoughts will be helpful to people who are new to this journey and are trying to find their way through life yoked with this disease.
Here are my top 10 lessons learned about living with cancer:
- As much as we want to be Miss Happy Pants, we can’t always be the positive ones. Christian faith notwithstanding, I’m still grappling with why I’m dealing with not one, but two, life-threatening diseases. There’s a song by We are the Messengers that states, “Maybe it’s OK that I’m not OK.” I believe that. We’re not superhumans. I still get down, even after three years. But those days are fewer and farther apart than they used to be. We shouldn’t beat ourselves up about the down days, but rather accept that we’re only human. God’s grace covers us when we fall short.
- Humor beats negativity every time. The best medicine is laughter. It won’t cure our cancer, but we will certainly feel better and so will the people around us.
- The best way to deal with people who mean well is to nod and say thank you — even if they tell you stories about acquaintances who had this disease, forgetting that the person dies at the end of the story. They’ll tell you about all sorts of natural cures. Sugar feeds cancer. The government is hiding the cure. ______ (Fill in the blank) causes cancer. _____ (Fill in the blank) cures it. It’s OK. You also can’t believe everything you read, particularly on the Internet.
- Even if we don’t want to, we need to let people help us. It makes them feel better, and it really does lighten the load. Sometimes it shouldn’t be about us.
- Waiting is a part of life when you’re a cancer patient. Being cranky doesn’t help and only makes everyone miserable. I read, I write, I people watch while waiting for lab work, waiting for the doctor and waiting for treatment in the infusion room. And yes, sometimes I still get cranky. But I’m working on it. By the same token I’ve learned that poor customer service isn’t acceptable and it’s OK to say so. Patients are customers. They have choices. We’d all do well to remember that. Sometimes offering civilized, constructive criticism is the only way service improves.
- Educating ourselves is important. Knowledge is a powerful weapon in our treatment. We’re members of our medical team. We’re our own best advocates. I print out research articles. I’ve learned how clinical trials work. I understand that drugs from clinical trials reported in the media may be years down the road from being available to cancer patients. I also understand that they may be astronomically expensive and may extend progression-free survival (PFS – a good acronym to know) by a matter of months rather than years. Progress finding cures for the myriad of cancer types is made in tiny, pain-staking, mind-numbing steps, no matter how much TV news anchors shout “major breakthrough.”
- Three-month CT scans or tumor marker tests will always be scary. I’ve been watching a TV show in which one of the characters is a man with breast cancer. Like me, he’s NED (no evidence of disease) and his friends keep telling him it’s all good until he explodes and shouts, “that just means I get to hold my breath for another three months.” Someone who has cancer or has a loved one with cancer wrote that line. It so perfectly describes what it feels like. All should be wonderful when you’re “cancer-free,” but it feels like walking a tightrope day after day knowing any second there’ll be an earthquake and you’ll be thrown into the dark abyss below. I had my three-month scan on Jan. 8. Results are pending, but my tumor markers are trending up again. When I think about it, I want to barf, even after three years of scans. So take deep breaths and hang on. Whatever the results, you’ll deal with them because that’s what people with cancer do.
- Sometimes, we’ll handle those times of waiting better than others. Again, no reason to beat ourselves up about it when the negative thoughts reassert themselves. I have learned mechanisms for coping—keeping busy, exercise, prayer, Bible study, volunteer work and humor are among them. I strive to redirect the thoughts by counting blessings or memorizing verses or reading a good book. In short, to not wallow in them.
- We recognize better than most that life is short. Before you turn up your nose at this cliché, ask yourself how much time you spent in the last week binge watching TV or playing on your phone. When was the last time you hugged a loved one or said, “I love you?” When was the last time you were happy at your job? When was the last time you did something for someone that made you feel really good about yourself? When was the last time you felt content with your life? If you can’t remember, you’ve lost sight of the truth behind the cliché. People with cancer know life is short. The question is what do we do about it? In the evening, I review my day and ask myself if I accomplished anything worthwhile. Or did I waste another precious day? When your mortality is sitting on your shoulder whispering in your ear instead of a tiny speck on the distant horizon, reality tends to be a constant companion. So now’s the time to do whatever your heart has been calling you to do.
- Finally, do what is right for you. Ignore advice from people like me if it doesn’t work for you. There’s no right way to get through life joined at the hip with cancer. What counts is finding your way.