Posts Tagged ‘attitude’

The Body-Biography Connection

04.14.2013

Who are we? What makes our lives what they are?

These are some of the essential questions of our humanity.

Some answers to this question place a lot of emphasis on free will and merit, that our lives are largely the result of our deliberate action and inherited talent. Other answers emphasize the social forces that come into play, like poverty and access to education, that shape our life chances.

I had been heavily steeped in these sort of debates, but these conversations did little to prepare me for cancer.

When we fall ill, there is no escaping the profound connection between our bodies and our biographies. Social scientists Anselm Strauss and Jennifer Corbin illustrated this body-biography connection in different illness scenarios:

body-biography

The dashed line represent an individual’s unfolding life story and the solid line represents the body’s path, both over time. The top diagram shows a chronic illness situation, with the body having its ups and downs, the biography dipping sometimes and holding steady others. The second diagram shows sudden catastrophic illness, with both the body and biography taking a drastic, irrecoverable dive. The last shows an acute illness and recovery, with the body and biography in sync.

I have been thinking of what the picture of my body-biography would look like. I think I would need to have different color lines for the different subplots in my biography; some aspects of my life have recovered better than others. It’s that very disconnect that can make day-to-day life uncomfortable: my external body looks recovered (well, with my clothes on anyway), but my energy and psyche are not back to their baseline.

This past week, my feeling of returning to my old biographical path got a boost.

As many of you know, I am a professor. One of the great parts of my job is that I get to have a sabbatical now and again. I haven’t yet had one in my career, and had really looked forward to taking my family abroad for some stretch of time. Travel has always been a great learning experience for me, and I was excited to share that with my children.

Things have fallen into place: my sabbatical request was granted, the visiting scholar fellowship came through, and we are off to Israel for a couple of months next Fall. There is still a lot to be worked out, but what a delightful disruption this will be.

It has me hopeful that, someday, my biography will feel like it’s mine again, like I am authoring the story and not simply having to maintain a sense of myself in the face of the loss of illness. This is a big first step.

 

 

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Posted in Survivorship | 1 Comment »

Lance Armstrong, Susan Komen, and Me

01.20.2013

I have had variations on the following conversation ever since I finished treatment:

convo

 

I know this does not make me popular. I know some of you reading this find me coarse and unnecessarily harsh.

But you how no idea how much pressure there is to be inspiring after cancer.

Perhaps if my initiation into CancerLand had not involved losing somebody dear to me, I may have taken up this mantle and done my best to own the Heroic Survivor story.

But I came in to my diagnosis with the rawness of losing my brother, lending me a take no prisoners attitude against cancer.

I always wanted to know the goriest details. I had no romance for this experience. My oncologist marveled about me early on in my treatment, “You have no denial mechanism.”

So what does all this have to do with two of the most famous cancer patients of our day, Lance Armstrong and Susan Komen?

Like my brother, Susan Komen died at a young age. Her sister Nancy Brinker famously promised™ to help put an end to breast cancer.

I empathize greatly with the young Nancy. I know firsthand the impotence we feel as we watch somebody we love die. I understand the appeal that her organization holds, particularly for those left behind who want to do something in the wake of so much helplessness.

In becoming a legend, Susan Komen ceased to be a full person. Instead she became a symbol for her sister’s wish. Who knows what Susie was really like, since her persona has been carefully crafted by her surviving sister. (Twitter is haunted by a ghost who begs to differ with Nancy’s account of her love of pink and shopping).

Whatever the truth once was, Susan Komen has become the Noble Patient who gave her sister’s life Greater Purpose.

Then there is Lance Armstrong. Like Susan Komen, he was diagnosed with cancer at a young age. Like Susan Komen, he faced Stage 4 cancer. He not only managed to achieve remission, he became a paragon of health, winning the Tour de France an astonishing seven times.

Lance Armstrong became a legend. He beat the unbeatable, the Ultimate Survivor, becoming an inspiration to many who donned yellow bracelets and hoped to be half as lucky as he.

Many of these same people felt betrayed this past week as Lance finally admitted to doping to bolster his performance.

I was not among them.

Personally, I had long seen the limitation in his story as an exemplar: testicular cancer is one of the few cancers that is reversible at Stage 4. But details like that don’t matter in hagiography.

So while I am grateful to Livestrong for drawing attention to survivorship as a phase of cancer with its own needs for medical attention and social support, I am not heartbroken to learn that Lance’s feet are made of clay.

Lance’s legend, like sweet Susie’s, has put undue burden on plain folks like myself whose path to recovery is neither straightforward, triumphant, or full of Hallmark Channel Movie inspiration. (My friend Xeni wryly calls the saccharine survivor genre “cancer porn.”)

Lance, it turns out, is all too real. I am sure Susie was too. Lord knows her sister Nancy is.

So, Well-Meaning People, this is the answer to your question:

My life was rich before cancer took my brother from everyone who loved him.

I had gratitude before I had to go through almost two years of devastating treatments from which I am still experiencing side-effects, social, emotional, financial, and physical.

Am I humbled by my friends’ love for me? Absolutely.

Have I redoubled my commitments to be there for others in their time of need? Undoubtedly.

But, really, Well-Meaning People. This is just a deepening of what already existed for me.

If cancer were eradicated tomorrow, life would still provide plenty of adversity to remind us about what counts.

 

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Posted in Survivorship | 19 Comments »

Mortality Acting Out

11.11.2012

What do Walter White and General Patraeus have in common?

Aside from being white American men of a certain age, maybe not much.

But they do both have a cancer diagnosis.

Does this explain the General’s recent revelation that, after a 38 year marriage and while holding a position vulnerable to blackmail, he has been carrying on an affair, perhaps even with two women at once?

I do not generally engage in the gossipy side of news, but when I found out that, beyond the scandalous headlines, Patraeus is facing a cancer diagnosis, I could not help but wonder if the two were related.

Since my brother’s diagnosis over 7 years ago, I have witnessed and experienced firsthand numerous instances of what I have come to call Mortality Acting Out. As I explained on twitter this morning:

Since becoming a patient myself, I have used my anthropological skills to explore CancerWorld and document instances of Mortality Acting Out. I have heard stories about sudden affairs after longterm monogamy, increased promiscuity, quitting stable jobs, breaking off friendships, and reckless spending. It’s like a midlife crisis on steroids.

Do you have a story to share? You can add it in the comments section or email me at babe[at]chemobabe[dot]com. I will write a follow up post on this topic in the coming weeks.

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Posted in End of Life, Survivorship | 1 Comment »

The Sacrifice We Make

08.25.2012

When I was a young girl, I liked to read Grimm’s fairy tales. Not the cleaned up versions, but the old school ones with cruel villains and extra spooky plots.

I had seen enough ugliness in the world to suspect that the saccharine, popularized retellings were inaccurate in their representation of the world, so I sought out dark stories that felt more honest.

As I have been processing all I have gone through, I keep thinking back to The Seven Ravens. In it, a girl’s seven brothers get bewitched and turned into ravens. She goes on a quest to find them, and learns they are locked inside a glass mountain. The only way for her to free them is to cut off her finger and put it in the keyhole. She does so without hesitation and frees her brothers, who resume their human form.

 

The moment where she cuts off her finger always caught my breath. It was one line in a very brief story, but I meditated on it as a child.

What would I have done in that situation? How badly would it hurt to cut off your own finger? What went through her mind as she brought the knife onto her own flesh? How did she have the strength to actually push it through all the way? Does she realize that she will never have that finger again? Will her brothers ever understand what she did for them?

The Seven Ravens and the questions it forced me to ponder are not unlike what I had to face as a cancer patient. I willingly chose terrible suffering, a cruel regimen of pain, as a sacrifice I made to have more life.

Being a participant in my own pain is not something that came easily or that I am getting over. As my friend Xeni has entered the middle part of her course of daily radiation, I am reminded of this unnerving aspect of the treatment.

Climbing on the table. Day after day, even as your skin gets sore and maybe even blisters. Even as you feel the energy draining from your body. Like the ancients who sacrificed animals to unknown gods, we offer ourselves up to the unseen cells we seek to placate.

All this is done on our own accord. Unlike chemo, nobody typically escorts you. The sessions are brief and frequent. You climb on the table yourself, get into position. Unlike surgery, there is no heavenly moment of Versed bliss before you lose consciousness and it is all in the doctors’ hands. Your volition, your showing up, your stillness and cooperation is what makes it all work.

What prepares us for this? How do we make sense of what comes next?

As the news of NED sinks in, as I approach my three year milestone, I vacillate between anger at what has been lost and amazement that I am still alive.

My arm catches fire with lymphedema and nerve damage.  I am in anger again.

My brain gets clicking, my energy sustains me through a day, and I connect to what I love most in life. I feel immense gratitude.

I thought the roller coaster ended with treatment. But I now see recovery has its own ups and downs. We are reminded by our own bodies, by our friends’ stories and suffering, of all that we have endured.

The challenge, as I see it, is to make the most of the moments of joy. To seek them out.

That may be the only way to make good on this terrible sacrifice.

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Posted in Survivorship, Treatment | 6 Comments »

Marking Time

07.26.2012

With no big medical events on the calendar, I am, in many ways, more normal than I have been in almost three years.

But yet I am not.

I don’t need to rehash the combination of fatigue, lymphedema, fogginess, and trauma I have been left to sort through. I’ve covered that mess already.

If I am not my Old Self and I am not a Cancer Patient, who am I?

For instance, I like to think of myself as reliable. Right now I am not.

Will I ever be again?

Much of recovery involves managing expectations, both my own and other people’s –– and on an uncertain timeline.

It’s not easy. Sometimes I have focus and energy. Sometimes I don’t. Sometimes I have pain and exhaustion. Sometimes I don’t.

I have not found any predictable rhythm to it.

I have been trying to make room for this uncertainty: don’t overcommit, stay forgiving of my limitations. Let myself rest, bow out. Listen to my body.

Stay realistic, despite the ways I am champing at the bit to get back to that magical land of How Things Were.

Take myself off of a set timeline, let things unfold as they may. People call it a New Normal, but there is nothing normal about it.

If my wellness were the only uncertainty, maybe I could manage to make space in my life for this to work itself out.

But there is that other shadow in my life, the fear of recurrence.

With odds somewhere between 20 and 30%, most breast cancer patients cannot ignore that reality.

It’s a haunting and existentially impossible situation:

What if I give myself time, stay gentle in my expectations, and I get pulled up short again?

How do I let Time Heal All Wounds when I am Racing Against Time? When life may pull another fast one on me and the clock may abruptly stop?

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Posted in Survivorship, Wellness | 17 Comments »