Our Wakanda: Colorectal Cancer and Secrecy

Of course, I didn’t really know Chadwick Boseman. I’m just a “regular” chick who happens to live in some proximity to stars. Chadwick was a celebrity, the famous and glamorous Black Panther, the gorgeous warrior and the King of Wakanda. I saw him in one film only and I thought he was great in it. He lived in my city, the City of Angels. I might have even run into him at the Whole Foods store or some restaurant and didn’t recognize him. Happened before with other celebrities. But not with him. At least I don’t think it did. Why? Because at the height of his fame, when I could have recognized him, he probably wasn’t out all that much. He was very sick, stricken with the same illness I’ve battled, illness which still hangs over me like a damn Damocles sword.

I feel close to him. And I’m sure so do countless fans around the world. The announcement of his passing reached seven million retweets within two days. But I feel closer to him, I think. And I also know that I probably shouldn’t. There are millions of people in the world who currently have or have had colorectal cancer, this dreaded disease that is attacking now younger and younger people. So, why did this particular person’s sudden passing which was also the first admission of his illness touch me so much? Why did it throw me into this mood, a mixture of fear, guilt, anger, depression, and so much more?

I lost other friends to this cancer, some of them only Facebook friends, some actual people I got to know and cherished their bravery, resilience, and stubborn clinging to hope. Their passing depressed me every time to the point where I actually had to stop visiting cancer forums and FB groups for the fear of befriending someone, just to learn a few months or a year later that they had passed. Every time it happens, it hits you like a ton of bricks. You ask, will I be next? Why wouldn’t I? I’m not any better than they were. Not younger, not fitter, not luckier.

But with Chadwick, it was still different. Shock, disbelieve, exasperation. This beautiful man with his strong, sculpted body, the glistening brown eyes, and the gentle voice with adorable Wakanda accent was harboring a secret. At the height of his career he was diagnosed with stage III colorectal cancer and went through grueling treatments to fight off the beast. This I know for sure. The standard of care for stage 3 colon cancer is pretty much the same, no matter where you get treated. I went through it and I know how rough it is. And yet, despite the surgeries, radiation, chemotherapy, fatigue, depression, and all the other shit that comes with this illness, Chadwick continued working, acting, and getting accolades for his work. Never told a soul. Kept it all to himself. Maybe only his fiancé, and later wife, knew of his struggle. Why? I find myself pondering this question. Was he afraid to admit his vulnerability? Did he feel it would be out of character, considering the roles he was playing? Did he not want to concern others with his fight? Or did he simply want to avoid getting pity from others? Has he chosen silence for strictly pragmatic reasons like the need or want to work? 

His illness was top secret. Just like Wakanda was a secret kept for centuries and millennia. We know how the film ends. Keeping the great achievements of this fictional society from the world was wrong, so goes the film’s final pronouncement, and it caused suffering and unnecessary deaths. Colorectal cancer, even though the second most deadly cancer in the US and one of the leading cancer deaths worldwide, is still largely a kept a secret. Patients are reluctant to speak about their symptoms which are related to digestion and elimination. Usually, the first sign of any colon or rectum trouble is blood in the stool. Or, change in pooping habits. Or, change of the way the poop looks or smells. But, oftentimes, patients don’t want to discuss it with their doctors and, even if they do, they often get misdiagnosed as being plagued by hemorrhoids or some other minor issue.

Colorectal cancer is the 2nd leading cause of cancer death among men and women combined in the United States.

Fight Colorectal Cancer

Remember that kids’ book “Everyone Poops”? There was an effort made there to stop stigmatizing poop talk. Everyone poops, so why is it so hard to talk about it? The best way to prevent CRC deaths is prevention. This cancer is highly curable when caught early. So, my plea is this. To avoid the mistakes Wakanda made, TALK ABOUT YOUR POOP OPENLY! Don’t be ashamed. Look at it. Observe how it changes. Talk about it. It could save your life.

Then, there is this other secrecy. Chadwick, the actor’s, real secret was a secret the bearers of which are many. Me personally, even though I did let the world know about my illness five years ago, even I kept some things only to myself and those closest to me. In cancer in general, there are things that remain untold. Some, for pragmatic reasons. You want to keep your job because it gives you your health insurance and a paycheck. You plug away through chemo while working because you have to. After your hair falls out but you did not inform your employer that you had to go through the second round of chemo, you wear a wig and pretend that it is your own hair. Even though you suspect that everyone knows that it’s not. But no one says anything because they don’t want to hurt your feelings. Or, they don’t know what to say. Or, they don’t want to bother. 

They are not bad people. They wish you well. It’s just that they lack the language. Facing a potentially terminal patient is a bit like confronting your own death. You are faced with mortality and it is only human to avoid this as long as one can. Our energies want to go elsewhere. We choose Eros over Thanatos for good reasons. Life is demanding, and death – whether our own or that of others – can wait. What are “normal” people supposed say to a cancer patient? “You look good”? When in reality you looks like shit. “You look like you’re in great shape”? When you are emaciated to the point of malnutrition. “Keep up the fight”? When you are tired of fighting and would rather give up. But, how can you? It is not only about you. It’s also about your kids, your husband, your legacy.

60% of colorectal cancer deaths could be prevented with screening.

Facts About Colorectal Cancer

Living with stage IV cancer, even when blessed with remission like I am, is a constant play of weird and confusing feels. Because I’m out of treatment for the past four years, I learned to sometimes forget my cancer. I’m healthy, I’m fit, I eat well, I work, I play, I love and am loved. It feels good to forget. But then… then it feels awful. After a while, you catch yourself thinking, I had cancer, but what if I still have it? What if it’s lurking within my body, ready to pounce as soon as I start thinking, I’m in the clear. And the guilt creeps in. And the fear. And the nagging suspicion that if I forget I had or have it, it will surely rear its ugly head to remind me. 

There is hope. The longer I live beyond the diagnosis and recurrence, the better my chances seem to be. That is the hope, that is what the doctors are telling me. Hope is hard to let go of. I hoped after the initial diagnosis that the cancer did not spread beyond the original tumor. And it did not. At least not for a while. When it did, it felt like a slap in the face. But then again, the chances were high to begin with. But I hoped, and then, when the hope did not materialize, it seemed like it was harder to accept the reality. So, is hope right or is it wrong? Is it better to expect the worst and then be surprised when it does not materialize? But then, how do you go on, if you don’t believe there is a light at the end of the tunnel?

I can only imagine what Chadwick has gone through. Not only physically but also on the mental and spiritual level. Seeing his strong muscles wither away, witnessing the skin and hair changes, dealing with a temporary or permanent ostomy, becoming weepy and depressive, unable to sleep or unable to keep your eyes open from the fatigue. Wanting people around but then not being able to stand them when they are there. Actually, I probably can’t really imagine his struggle. Everyone is different and everyone bears their cross in their own way. Still, I do have a glimpse. He must have hoped, otherwise, he would not have gone through the treatments. He must have been scared. Everyone is. He was a praying man, so says his Wikipedia page. So, he probably prayed. And hoped. And believed. 

I hope too, I cling to hope every day because I must. And then, next to hope, there is its ugly sister – guilt. The guilt for having survived and continuing to survive. Why me? Why not him? Such a young thing, younger than my baby brother, seven years my junior! The survivor’s guilt hits me every time I hear about someone succumbing to this monster of a disease. Two weeks ago, it was Chadwick Boseman, last week it was someone from the Facebook group, just a few days ago it was the husband of a dear friend. Why did they go so early? Left husbands and wives, babies, and teenagers behind. Why them and not me? What makes me so damn special? The guilt nags. The hope bothers but sustains. The fear takes over on occasion. And sometimes, there comes the oblivion, and it is pure bliss. Until the paranoia takes over again and shakes me to the core. Don’t get too comfy girl! The big C is just around the corner.