Yesterday was World Lung Cancer day. We spent it letting Raine play at a park. He ran and jumped and squealed and shouted. There was a sand pit with a "mountain" that he fought hard to climb up to the top of...over and over again. Sometimes older children held his hand and ran with him up the mountain and helped him. (What sweet children). Sometimes he did it all by himself! Then he'd launch himself down again to the sand. There was a play train he poked around in, sprouting fountains to run through, and a super mega playground structure with three slides and rope climbing. Pure kinetic joy. Dan and I shuffled from bench to bench while we watched him play and I enjoyed the stillness of my body cuddled next to Dan's.
The internet was buzzing with updates and stories sharing current experiences and honoring others who died. I read a few articles and blog posts. I resisted the urge to do much more than that. I started to write this post yesterday, but stopped. I watched TV, helped put Raine to bed, and drank an extra beer. I often still resist being a part of all of this.
And again, it is scan week; a worrisome few days. I feel lonely and tired. Dan will have a CT scan and MRI Wednesday to check the cancer. This will be his first MRI since February when they announced the necrosis of his brain tumors. There is a misconception among friends and family that Dan is in "remission" and I do not wish to burst any bubbles, but this is a cancer that has no remission. Even if his doctor used the word "remission" at some point in his future, which would be unusual, it isn't the type of remission that I think we all picture in our minds: Free of disease. There would still be tests, medications, side effects, and the damage that has been done. Not to mention a sense of inevitability about the cancer activating again. Dan's type of cancer--ALK NSCLC--has relentless growth and overcomes all obstacles that modern medical and alternative medicine puts in its way. We are always waiting for the other "shoe to drop." There will always be bad news; given to us in small white offices, among medical supplies and flat landscape photographs in cheap frames, while I fight back tears. No matter what. I don't describe this to be a Debbie Downer. I describe this to give an accurate portrayal of how lung cancer affects the family. I would never wish this experience on my worst enemy. It is brutal and heartbreaking.
On the other end of the spectrum, we have to live in hope to survive. We have to scrounge up whatever seeds of optimism we can and water them with a bit of true dedication. The medical advances for lung cancer are phenomenal despite such pitiful funding. Dan is benefiting from tremendous improvements in understanding lung cancer and treating it. Just EIGHT years ago, his cancer gene, ALK, was only discovered! The medicine developed specifically for ALK are going to give Dan more time, and more of that time without debilitating treatments. His story does not have to end with a stage IV diagnosis; he can continue to watch his son play, and romance his wife, and poke around his garden, and fill his mother's heart with delight.
The science. The progress. The hope. It is bittersweet to have a day set aside for this disease. It robs so many people of life--more than any other type of cancer--but it truly needs more attention. Imagine if the stigma around lung cancer was removed, and support for lung cancer research was increased! We could save so many more lives and extend the lives of patients like Dan. Not to mention the amount of progress that could be made in preventing cancer or educating everyone about radon and carcinogens, keeping lungs healthy and treating asthma or COPD--as well as early screenings for higher cancer risk individuals and their family members. Above all: Remember that this is NOT a "smoker's disease." If you have lungs in your body, you can have lung cancer, and no matter how healthy you are! Please just Be. Aware! And certainly do not judge a person who has lung disease, including cancer, because they smoke or smoked. I hope you will be inspired by Dan and I and focus on loving and respecting others.