The language of cancer.

So, you know how when you buy a new car, and you're all proud and excited about this unique, cool, tricked-out blue SUV you just got, and then you're driving around town, and suddenly everywhere you look there's another blue SUV exactly. like. yours. You know that strange awareness?

Getting cancer is like that. You know it's been around and tons of people have or had it, but you never really paid much attention to it. Now it's all you see. You're suddenly hyper-aware that everyone has either got it, had it, or knows someone who does. Every street corner has a shiny new cancer clinic on it. Every TV ad is for Verzenio, Opdivo, Kisqali, Ibrance, Keytruda or some other targeted cancer therapy. Cancer is EVERYWHERE.

But worse than the ubiquity of it, is the language of it. It's weird. First, almost immediately, the way everyone communicates with you changes. They sorta kinda tiptoe around it, like Voldemort in Harry Potter. Nobody wants to say the dreaded 'C' word for fear of catching it, or perhaps that even mentioning it will somehow cause us to dissolve into a puddle of tears. Then suddenly everyone starts treating you differently. The concerned looks, the gentle touches, the over-sincere hugs, or the awkward silence like the proverbial elephant in the room that nobody wants to talk about. And when they do talk about it, their language takes on a particular vernacular:

"You're gonna fight this, right?"

"You've got a long battle ahead of you."

"You guys are so brave."

"You're gonna beat this, for sure!"

When cancer gets bad, tumors and cells are called blasts. The doctors tell you they have "arsenals of therapy weapons, to combat the illness (seriously!). When people's disease goes into remission we say they conquered their lymphoma, or whatever. Or if it doesn't, then "she lost her battle with breast cancer". It's the WAR ON CANCER. And I hate that language. 

It seems that every US President must declare war on something. Hoover declared a War on Crime. LBJ had his War on Poverty. Reagan gave us the War on Drugs, and Bushs I and II  drove the War on Terrorism. I guess we have Nixon to thank for the War on Cancer. Tricky Dick signed the National Cancer Act of 1971 into law and inaugurated how we talk about it forever more.  

I'm refuse to use this language. Cancer is not an enemy to be vanquished. This isn't a zero-sum win/lose battle. I'm not a warrior, and I'm not trying to fight anything. Cancer isn't even a thing. What does it mean to "have cancer"? There are more than 200 different kinds of illnesses that fall under the cancer designation. Some are so benign you don't even know you have them and can live a long, complete life with them. Others are so malignant they will cause you to die in a matter of weeks. When you hear 'cancer', you immediately think of tumors. But I don't have tumors and probably never will. There is nothing that can be surgically removed from my body that would help me. Even saying I have Leukemia doesn't begin to describe what I have. I'll share more about my specific leukemia diagnosis in a future post.  

CMML-1, my specific blood cancer, my form of leukemia, is an illness that has come into my life. It presents me with very few treatment options. The reality is that this disease or its aftereffects will be a part of me for the rest of my life. If I do nothing, it will cause my internal organs to fail in the relatively short term and I will die. There is no surgery to be performed. There is no drug I can take that will drive it into remission. The only option for me to potentially extend my life is an allogeneic stem cell transplant. More on that in a future post. 

If the Allo-SCT procedure doesn't end my life (10% chance of that), and if, in the subsequent months post-transplant, my bone marrow is able to produce normal blood, there is still a very high possibility that I will have to live with the after- and side-effects of something called Graft Versus Host Disease, which can also be life-threatening. I'll be living with the specter of leukemia's possible return, or from the likelihood that other forms of cancer will materialize in my body, or that my body decides to reject the new cells or vice versa. I'll be on medications for the rest of my life. So there is no vanquishing. There is no defeat. There is no battle to be won or lost. I live with this in one way or another, or I don't. 

And now, cancer has come to live with us. Not just me, but unfairly, with Karla as well. It's like some unwelcome, rude, demanding squatter has walked in our front door and taken up residency in one of the bedrooms. He shits in the hallway, drinks all my good booze, blasts death metal on the sound system, and we hate him. But he won't move out, the cops can't evict him, and so now we have to figure out how to restructure our lives around him.

It's early days for us still. I don't know how our cancer language will evolve, but it won't be around the metaphor of war. My path will not destructive. It will be transformative. I like that idea much better.