Sur-vi-vor, noun [ser-vahy-ver]: a person who continues to function or prosper in spite of opposition, hardship, or setbacks.
As we enter a new phase in the understanding of cancer biology and its subsequent treatment, increasingly, more of us are living longer and fuller lives, with at least two-thirds of those diagnosed living at least five years. Yet extreme fear or awkwardness -- or both -- surrounding the topic of cancer survivorship has rendered even the most hearty either mute or shortly absent at first discussion. Truth is, we all have a story, often tragic, of the consequences of a cancer diagnosis. And whether that story is conceptually outdated, inaccurate, or mutated into some "whisper down the alley" facsimile, it is very real to us. So thank you very much, I'd just rather not discuss it. But I would bet that you also know many stories of quiet triumph over cancer, powerful stories of unparalleled growth of the human psyche, which transcended the reach of cancer and in doing so became... well, normal. Amazing and courageous stories lost to the banality of normalcy. So in honor of the more than 12 million Americans now living with a cancer diagnosis, it is time to begin a gentle discussion of the newer philosophies and definitions commonplace to the journey through cancer. It will affect us all in some way or another. Shouldn't we all have a working knowledge of this topic?
Of tantamount importance in the cancer lexicon is some acceptable name of a group of individuals who have been diagnosed with cancer. Far too frequently this nomenclature, laden with some judgment as to the burden of their disease, has been applied to, rather than derived of, this amazing group of folks. Resultantly, each newly-floated collective noun of the cancer experience has been shot down, one after another in favor of a more inclusive, less judgmental descriptor of the entirety of the journey through cancer: from prediagnosis through diagnosis and treatment through remission and cure -- or, if unsuccessful treatment, palliation and death. The term currently in favor to define such person is "cancer survivor."
"Victim" and "Hero"
Older terms in use a generation or so ago, generally foretold the final stages of the journey: those who beat the odds -- heros, those who succumbed to their disease -- victims. Surprisingly, and sadly, I hear these terms still used today, often by caregivers or journalists struggling to imply some degree of the depth of the experience. Cancer survivors universally shun these terms, which simply do not describe the entirety of the journey. And they are far too laden with somebody else's judgment of their predicament.
For instance, my grandmother -- or Grandmaman, as we called her -- was the "victim" of colon cancer in the early 1980s. Her late-stage diagnosis, due to no standardized colonoscopic screening, resulted in a colostomy and many years of suffering as a result of chemo and radiation. Yet during her five-year cancer survival, she taught me the power of human resiliency, the joy of a large, close family, and the love of new knowledge. All values I still cherish today. She was, and remains, my shining hero. And Lance Armstrong was the "hero" of advanced-stage testicular cancer in the late 1990s. Despite surgery, chemotherapy and radiation, Lance resumed his elite athlete status and continued winning numerous world cycling championships, including the prestigious Tour de France seven times. His development of, and support for, the Livestrong Foundation broke the chains of cancer bondage, finally introducing the word "hope" to cancer survivors. And in doing so ascended the altar of heroism, seen by no mortal since Hercules. Yet in the topsy-turvy world of cancer survivorship, hero becomes victim and vice versa. So let's just let those to terms go, they're too judgmental and rarely tell the whole story.
Patient
Those carrying a cancer diagnosis are often labeled as a cancer "patient" by the medical community. Although this term is nonjudgmental, it generally implies some active treatment is taking place: the fresh wound of surgery, the recurrent nausea of chemo. And when you think cancer "patient," what comes to mind? Yeah, I know, me too. I don't want to see those TV commercials anymore, either. The images that compel us to donate also reinforce the stereotype of the ghastly outcomes of cancer and its treatment. But for many patients, treatment is a small part of their journey, and for others treated as a chronic disease, the side effects are manageable with some lifestyle alteration. At the risk of being labeled a Pollyanna, I fully understand that there are still others who do remain patients under active treatment for the entirety of a difficult course. My point remains, though, that the term cancer "patient" is best used for those under active treatment, and doesn't really apply to those who have long since outlived their disease.
"Conquerer"
Some cancer survivors choose their own personal monikers, oftentimes describing the intensity of their journey and the thrill of victory. The blogosphere and Twitterverse are replete with cancer kickers, conquerers, thrivers, warriors, victors, advocates and rock stars celebrating the sweet joys that life after cancer offers. While still others, undaunted by body image changes resultant from cancer treatment, taunt their disease with "ballsy" and "single jingle" for testicular cancer survivors -- or even, for one tough-minded breast cancer survivor, "bald sweaty bitch with one tit." In your face, cancer. But not really for everyone.
"Survivor"
Most carrying a cancer diagnosis self-identify as cancer "survivors." It is a far more universal term taking into consideration the breadth of the cancer experience while offering no judgment as to the burden or outcome of the disease. From one moment after hearing "I'm sorry, you have cancer," a survivor is born. And the term remains applicable throughout a lifetime, no matter which phase of the disease that the survivor is experiencing.
My wife, a five-year leukemia survivor, controls her disease with daily oral chemotherapy, which she will take forever. She and her drug have acclimated to each other, resulting in a meaningful albeit slightly less frenzied lifestyle with all the blessings and curses that motherhood has to offer. My dad, an eight-year prostate cancer survivor, has undergone surgery, and then radiation several years later when his disease recurred. He really doesn't ever recall being sick, and his cancer has minimally affected his lifestyle. My grandmother, a five-year colon cancer survivor, succumbed to her disease. And after several years of deep suffering, she passed away quietly with a tear in her eye. Each adopted different strategies to get through their journeys: lifestyle change, benign denial or deep depression. Each changed by their cancer. Each of them survivors.
For more by Rick Boulay, M.D., click here.
http://www.huffingtonpost.com/rick-boulay-md/cancer-survivors_b_2761607.html
34 comments:
Thank you for writing the absolute truth about what you are going through. It really matters. Keep fighting the fight... and luvin' life along the way... big {{ hugs}}
Jody
Thanks for writing,
Jody
I can already see how the honesty expressed here can help other women.
Thanks for reading,
Jms
Thanks so much for commenting -
jody
Much love, Jody... for sharing the story and MUCH love to my "sister" who has spoken on behalf of so many of us.
xoxox
"So how are you doing," people ask after treatment....who can say...."I'm so tired I can't lift my head, our sex life sucks, and there isn't enough help to go around?" No one wants to hear that.
But here's the deal - other survivors understand. And we can support each other through that shared understanding.
Thank you so much for writing, and I'm tremendously happy to hear that you feel hopeful for your future. That is wonderful news, my friend.
xxoo
-- jody
Thanks for the work you do,
Jody
I was diagnosed almost 5 years ago and our marriage just took the real hit 6 months ago.
There is sometimes no new normal.
Makes me want to cry.
Dianne Duffy
I'm sorry. We've all been at that terrible place. Keep trying to regain your health and serentiy.
Sending you good wishes!
JennT28,
I think all of us see ourselves in this article. Thanks for commenting,
Jody
A problem for all of us with cancer I think, is in making comparisons between groups, stages or types of breast cancer. It's necessry for advocating for research funds, grasping quality of life issues, and it's necessary for understanding the isolation that women w/mets often feel.
This is one woman's story, honestly told. Her honesty has resonated with many. It's not about having/not having metastatic disease.
Maybe there is a story you would like to tell as well?
Jody
Given the circs - no extended family close by, the human male's lack of skill in sharing this sort of burden with other guys - I know that the woman who wrote this is much better off than others, friends, who I've seen standing chemo-bald in a divorce attorney's office because their husband bailed on the whole scene.
It took courage for her to post this, and I'm beyond glad that she did. Cancer isn't typically a hearts and flowers thing, Much more puking and tears cried alone in the dark.
Thanks her, and to you, Jody.
The first comment on my FB page when it went up this morning was from a high school friend whose husband left her before he even learned how to spell chemotherapy. Not only did her life turn upside down from cancer but from his actions, too.
Thanks for supporting the writer:)
hugs,
Jody
Thanks so much -
xxoo
jms
Stories about what's really going on give us something more we can really connect with and learn from.
Best wishes to the poster and her family, especially her hub. And thanks for showing some reality. :)
KarenB
My wife doesn't have cancer, and we no longer think it's a fatal degenerative condition, but that's about the only good things we can say say about it. She has, among other things, POTS and a COQ-10 deficiency, leading to symptoms that are very similar to the effects of chemo--muscle pain, exhaustion, mental fog, low stamina. We've gotten to the point where we're able to manage the symptoms, and overall she's slowly getting better; but realistically a complete recovery isn't likely, and we'll be dealing with this to one extent or another for the rest of our lives. And that's a daunting thought.
Our relationship started right as her symptoms started to be a significant impact in her life. Even once we realized the extent of things, but before we had a solid understanding of the causes, she was willing to run herself into the ground to do as much as possible; hearing a doctor prescribe tests for a half dozen fatal conditions makes you want to squeeze out as much as you can. But eventually even that determination ran dry, and it was another year or so before we finally had a clear grasp on what was wrong and could even start to manage the symptoms. It's been a couple years now since we've been able to turn things around, however slowly.
In some ways, and I hate to say this, the "getting better" phase has been harder on me. She jealously guards her energy and her time, and her capabilities. And I don't blame her for that. But for the longest time, the hope was about finding a way for her to get better. Now that she is...well, the rate of improvement has not been what either of us hoped, and the rate of shifting responsibilities has not been what I hoped. And after a day that involves waking up to get her meds at 7, getting my stepdaughter to school, working all day (thankfully from home) getting the kid from school, cooking dinner (while still "at work") getting the kid to bed, and trying (and usually failing) to keep up with the cleaning, I usually stay up to late, trying to be productive on personal projects or the state of the house, but mostly playing games to de-stress. And so start the next day on 4-6 hours of sleep.
It's not all doom and gloom, of course. There are days that are better than others, and there are days where she ignores the warning signs and gives more, be it attention or help. And sometimes she's even able to hide what it costs her the next couple days so I don't feel too guilty.
But there are still days when I just want to run and hide. Not get out of bed. Lock myself in a room and work on a project so I can feel like I've done something constructive at the end of the day, instead of just tread water. Or do what I did in college, and book myself a long weekend in the city, with a cheap room that barely qualifies as a safe place to dump my stuff, and spend days just wandering. I really, really miss New York.
But I want to take her with me now. So I get up, and get her pills, and hope tomorrow will be better.
Yes, I know about FORCE and its founder, Sue Freidman, very well. In fact she was a guest on our weekly breast cancer chat on Twitter, #BCSM.
Karen B.,
I hear you. We sure AREN't saints. No of us.
Joe,
You're not stepping on anyone's toes. One thing the writer was clear about was how hard illness is on BOTH partners in a relationship. This of course includes children. There's no way around it - chronic illness is a slog. It's very difficult for all of us to say how bad at times; especially when the person we love is sitting right next to us. So I think it's important to recognize and support individual reactions and NOT take them personally.
Kudos to you for all you're doing, and best of luck to both of you. I hope your partner continues to improve.
Jody
But it isn't all okay. After the diagnosis, the fear, the treatment--the crisis--is the where the real work begins: living the day-to-day after such physical, psychological, and emotional trauma. I understand the stage iv comment; it's not projecting stage iv disease onto the writer, but another manifestation of marginalization. Many stage iv women feel "ignored" by the larger pink movement. And I think many survivors are ignored as well.
Helping individuals cope with/adjust to survivorship is a conversation that needs to happen.
Please thank your contributor sincerely for sharing her experiences so candidly. There are elements of her experience that I can identify with very strongly in trying to keep all the balls in the air whilst cancer is trying to get the better of us. What clearly comes through is the strength, mutual respect and good will for each other that she and her husband both possess, and I'm sending them both all the good feelings I can muster that this will be enough to get them through and out the other side with a happy, loving, stronger than ever marriage. It will never be the same, the sands have shifted, but in time, it may be better than it ever was. I really do hope so. Yvonne
You're spot on: marginalization is never OKAY. As long as there are unheard voices in the cancer conversation then there is more work to do. All of us can get prepared for surgery; or coping with nausea during chemo. But who could anticipate the dents in the relationships with those we love the most? These are all cruel blows.
And Yvonne,
I love your assessment - of good will, strength and mutual respect. I will tell her. Her post meant a great deal to me as well - as you can see:)
Thanks for your comment,
Jody
For young and old, stage 0 to stage 4, there are many discussions to have, and this was such a great introduction to many of those issues... and opened the door to many more talks about this. And I would be VERY interested to hear about this topic from a male who has undergone treatment for breast cancer.
Thank you!
I echo Kathi Kolb in that I experienced cancer as a single person, which had its own issues, challenges and burdens. If I learned anything from Rachel and Susan, it's that the more we differ (married/single; younger/older; early stage/metastatic), the more important it is to share/hear each others' true stories. In opening windows between our different realities, we get to understand each other better, support each other more easily, and become better advocates.
Liza,
You've got it! Even with differences it is essential for us to "hear/share each other's true stories...." That is lovely.
And Wintin,
Thank you for your beautiful perspective - I know from my own experience, since we have had four cancers between the two of us - the love and respect deepens with time. We are more patient. I know how he reacts to things and vice versa. It is quite different from when I went through treatment almost 15 years ago.
Wishing both you and your wife all good things,
Jody