We hear all the time about campaigns raising awareness for cancer. I always thought that promoting “awareness” was funny because we’re all aware, right? We already know about cancer. It’s tragic, heartbreaking, and an all-too-common occurrence. We all know people who have had it, and I’m sure we all know people who’ve died from it. We wear ribbons, run 5Ks, and donate money in honor of those who have lost the battle. We wear pink in October. We all hate cancer. We are all aware.
But I wasn’t that aware. Until I started writing this post I had no idea how prevalent cancer really was. According to The National Cancer Institute, 39% of Americans will get some form of cancer at some point in their lives. More than one THIRD of all people in the U.S. Let me repeat that: MORE than 1 out of every 3 people will get cancer. That figure seemed so outrageous to me that I hesitated posting it for fear of spreading sensational pseudo-statistics, but I found the same information from multiple credible sources.
Just thinking about all this is enough to send me spiraling into a depression. That’s probably one of the reasons I wasn’t very aware: I really didn’t want to be. It’s just too sad. There’s simply too much pain. But I believe in the power of empathy and in helping others through their struggles; which we can’t do if we avoid thinking about the hard stuff and pretend it doesn’t exist. I’m usually an open book (to a fault) and so I often overshare, but when it comes to tragedy I get very uncomfortable and tend to clam up. As someone who struggles with depression, it feels like I’ve had all the sad feelings I can handle already, so in an effort to avoid The Sad Feelings, I’ve been known to ham it up with inappropriately light-hearted jokes at inopportune times (like at my dad’s funeral). It may seem like I’m not taking it seriously or that I have a heart of stone, but in reality I’m attempting to stave off an episode of sobbing in the fetal position and rocking back and forth (I tell you, I feel things!). However, refusing to acknowledge a problem has never made one go away.
So today I want to share with you my newfound awareness; not of the devastating death toll that cancer leaves in its wake (that’s a whole separate subject), but of the hardships of those who actually survive it. If a third of all people in this country are getting cancer, there are going to be a lot of survivors struggling with the aftermath. I’ve known people who have either died from or survived cancer, but none that were very close to me so I was pretty ignorant about it. I used to simplistically think that you either beat cancer (yay!) or you didn’t (boo!). I never stopped to consider the complexities and difficulties involved in fighting off the disease, nor of the many battles one is left to fight every day afterward.
There’s a Daily Mail article called, “The Downside of Beating Cancer.” Oh geez, I thought, you don’t have to say it quite like THAT, do you? I mean, it even made me uncomfortable just typing that title because it seems like I am minimizing the tragedy of NOT beating cancer. But life is more complicated than that. Of course the desired outcome is to beat the cancer and live a long, happy, cancer-free life. The problem is that we may not be aware of the physical and emotional scars the survivors carry once they have already beaten it. Even wonderful blessings can be excruciatingly painful (think, for example, of having a baby), and cancer survival is certainly no exception.
I recently came into contact with Heather Von St. James who was diagnosed with malignant pleural mesothelioma just 3 months after the birth of her daughter. She was told that without treatment she would only live another 15 months, with chemotherapy and radiation treatments she could live 5 more years, or with an experimental surgery AND chemo and radiation she could possibly live another 10 years. She opted for the experimental route and is now 10 years cancer-free and counting!
As I was reading her story I cried. Multiple times. I cried for her fear and suffering. I cried for her against-all-odds success. I cried for her hope and faith and wisdom. And I cried for her struggles with “survivorship.” From her story I learned that surviving is not always filled with “yays.” I learned about the depression, anxiety, survivors guilt, job loss, friend loss, health problems, and the relentlessness of life that survivors deal with on a daily basis. I learned that for a cancer survivor, life never goes “back to normal.” You can’t go back to your old life, you can only go forward, passing through the hardship, and moving on to a new and different life.
In her blog series about her story, Heather opens up about life after cancer:
I spent an entire year of my life fighting an unseen foe. I threw everything at it I could to make sure I would make it to the 10 year mark they told me I “might” live to: a radical surgery, chemo, and radiation. When I finished my final radiation treatment, I was given a certificate—sort of like a diploma—saying I had graduated. I just sort of laughed at the absurdity of it all. I was done with treatment and all I had to show for it was a piece of paper, a hell of a scar and radiation burns. Now what? I was done with treatments, but had no normal life to return to. Everyone around me went back to his or her sense of normalcy while I was left in tatters. I was done with treatments, but I was still struggling with the effects of radiation. I felt pressure from everyone around me to just “buck up” and be grateful for every minute in the day, and to “live life to its fullest.” But I was a mess. I couldn’t remember what “full” felt like. People called me a hero; they told me I was so brave. But I was angry, afraid, and anxious. I became the busy person. If I kept busy, and became the perfect mom, perfect wife, and pretended that everything was fine, it would be. Was this what surviving was supposed to feel like?
I had never thought about a survivor coming back from “beating cancer” with so many battle scars, both physical and emotional; so many mixed feelings, both positive and negative; and so many pieces to pick up, mostly alone, when the casseroles have stopped coming and everyone wants you to be all, “yay!” all the time. One reason I’d never thought about the challenges of being a survivor is that I’ve never once heard anyone talk about it. I wonder if these courageous survivors (who have been to hell and back already) are afraid that if they admit how horrible they still feel, they’ll be seen as ungrateful. I imagine they’re afraid people will judge them with, “Well, you didn’t die though, did you? So you should never have a negative thought ever again.” But humans are still human, and life is still hard. After one battle is over, there will still be more battles to fight. Which is why we need to be patient with and sympathetic to our friends who have fought off this horrible disease: they may need it now more than ever.
If you have battled cancer and have come out the other side as a survivor, you may have dealt with things like:
- Depression: Honestly, Heather’s experience seemed a bit anticlimactic. You fought cancer and you beat it. Now what? What’s your purpose in life after that? I’d imagine you hit a pretty deep trench after climbing uphill for so long, getting to the top and looking around to feel like there’s suddenly nowhere else to climb to.
- Anxiety: As far as I understand it, there’s always a possibility that the cancer can come back. I can’t imagine having that fear haunting me my whole life. Anyone can get cancer at any time, but most of us live with a willful ignorance of exactly how horrible that possibility would be. But a survivor already knows full well the agony of fighting cancer. Having the possibility of relapse hanging over your head would feel like a ticking time bomb.
- PTSD: Post Traumatic Stress Disorder: it’s not just for war veterans. It can result from any trauma, even (especially?) a battle with cancer.
- Survivor’s guilt: It’s understandable to wonder why you survived when others weren’t so lucky, but it’s heartbreaking that someone who’s endured the pain and suffering of a disease that’s trying to kill them would then have guilt piled on top of that. We have enough to deal with in life without feeling guilty all the time, and that goes double for cancer survivors. It’s just not fair to suffer guilt for something over which you have no control, and for which you’ve already suffered immensely. Please, for the love of all that is holy, no more guilt! I give you my permission to live guilt-free! I know that in the same circumstance I’d be struggling with The Guilt Feelings too, but let’s try to think of it this way: If you had bravely fought cancer but lost that battle and were up in heaven looking down on all the amazing people you knew, wouldn’t you want them to be happy and peaceful, even though they miss you, and even though they survived and you didn’t? You know you would. And I think we know they would too.
- Job loss: I guess most employers can’t hold your job for you while you get cancer treatment for a year or so. And if you’re self-employed and take a year off, there might not be much of your business left when you are finally able to get back to it. Oh yeah, and now you have medical bills.
- Friend loss: Unfortunately, all your friends who don’t have cancer and can’t really understand what you’re going through may not stick around long enough to be there for you when you need them; and tragically, all your friends who do have cancer and can understand exactly what you’re going through may not live long enough to be around when you need them either.
- Health problems: You most likely were both cut open and nuked into oblivion. The only things that can kill the cancer, also tried to kill the rest of you. You probably are exhausted and feel like crap all the time.
- The relentlessness of life: When you’re in the thick of the battle, when you are consumed with day-to-day survival and picking up the pieces of a life thrown into a whirlwind, other problems will still keep coming at you. In Heather’s case, several years after her battle started, her father became sick and eventually passed away. I can only imagine the frustration at God I might be feeling when, after worrying about dying for so long, one of my family members dies instead. It’s hard enough when one tragedy strikes, but many at once is just too much.
I’m sure the above list is just the tip of the iceberg for a cancer survivor. Fortunately, there are resources for help and information like the cancer.net Survivorship page. Although there is much to suffer through as a cancer survivor, there can be much hope and joy, and Heather’s story is no exception (and I cried about that too):
“Slowly, the faith I so strongly held before began to creep back. Faith that the sun will come up another day. Faith that if I just keep moving forward I’ll be okay. Faith that I’ll see my dad again one day, and in the meantime, I’m making him proud. That makes me smile, and know I’ll be alright. I have experienced loss, more loss than a person should by being involved with the mesothelioma community. I have been losing friends on nearly a monthly basis since I got involved with advocacy for this disease. Having faith is a constant exercise. You must trust, ask questions, and believe that all will be okay.”
I love her statement, “Having faith is a constant exercise.” In a life that is unrelenting for us all, there is pain, but also joy and hope that can be maximized by increasing our awareness of each other. We need that empathy and togetherness. We need it because we can’t survive this relentless life alone: of that I am definitely aware.