Personal essay by Lori Monroe about living with lung cancer.
Life will never be the same. Not after a diagnosis of stage 4 lung cancer. Not after being told: “You have maybe six to eight months left.” It’s as if that moment was forever branded on my soul.
But those words never came to be. Oh, I have stage 4 lung cancer—and have had it for over eight years now. I’ve learned, somehow, to live with lung cancer; to wake up every morning knowing that cancer is residing in my body, only because I didn’t die from it.
It has not been an easy journey. There are hours, even days, when it feels as horrible as it did the first few weeks. It’s a cruel disease, without much good news to balance the devastating news. Besides the physical pain, there is the emotional battle that is, at the very least, equal to the physical battle.
I thought I would get used to living with lung cancer. That it would become easier over time. Although I can’t say it gets easier, I do think I have learned to ride the waves somewhat better. I now know that with every scan, the fear will rise up and take my breath away. I know that I won’t let my breath out until I see the oncologist and he is able to tell me that ­everything is still OK. Every time, I tell myself the same reassuring thoughts. I repeat, over and over, that I’ve had more good scans than bad scans despite multiple recurrences. I reassure myself that even if the cancer is growing again that newer treatments are now available and I have multiple choices. Somehow it’s still not enough to override the fear.
Living with lung cancer is difficult. But the point is I am living with lung cancer. That in itself is success. Advanced lung cancer is not always a death sentence. Other than telling my daughters I had what I thought was a terminal illness, learning to live with lung cancer has been the hardest part. Going to sleep knowing I had cancer, and waking up knowing the cancer was still there. It truly took me years to be OK with it.
I think it would be easier if lung cancer patients were offered empathy. When I tell people I have lung cancer, instead of hearing, “Did you smoke?” it would help to hear, “I’m so sorry. What can I do?” There is an undeniable negative stigma that comes with the diagnosis—one of blame and disassociation. It doesn’t change the disease; it does add to the overwhelming emotional pain that by itself is almost too much to bear.
My dream is to let this be the decade that the definition of lung cancer changes for all of us—physically and emotionally. Scientifically, treatment advances are being made, and more and more patients are learning to live with advanced lung cancer. And as more patients survive longer, we are able to educate and erase the negative stigma. All cancers are caused by genetics, exposure to carcinogens, and our life choices. The bottom line is it doesn’t matter how you get the disease, we all deserve effective treatments and a bit of empathy.
Lori Monroe is co-founder of Lung Cancer Foundation of America (www.LCFAmerica.org), a nonprofit that funds lung cancer research and advocates for the lung cancer community.