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Putting my story to the side

12.31.2013

Hello,

It’s been over 6 months since I posted on my blog. I have entered the stage of recovery where I am re-assembling my life, rebuilding my identity.

Although I have always been eager and willing to share my medical journey and what it has meant to me as a human being, this is intimate terrain, not something I care to share with the world of google.

Of course I still have medical stuff to deal with, but it’s small potatoes in the cancer world: scars, physical therapy, chronic lymphedema, scanxiety.

Meanwhile, friends and fellow cancer travelers contend with much greater challenges: ghastly long term side effects, unthinkable choices bequeathed by genetic testing results — even recurrences.

I am happy to keep my blog up as a resource for those who seek it here. My topic through this ordeal was fundamentally about the social and emotional realities of cancer and its treatment. Unfortunately, although the science has been advancing in important ways, the story of being a young mother with advanced cancer may not be changing so much any time soon. Same with my other story, being the sister of somebody who died too young from this awful disease.

I am grateful to have garnered so much love and support through this blog and other social media. It gave me a boost in my general faith in humanity that will stay with me the rest of my life.

No doubt cancer has changed me. Throughout my life, I have responded to adversity by becoming an educator and an advocate. It’s the only way I know to make my suffering worthwhile: by using the hard-won wisdom to lessen the suffering of others.

I will do this work primarily through the Breast Cancer Consortium, but I also will maintain my connection to organizations like Stupid Cancer, Little Pink Houses of Hope, Gilda’s Club, and Critical Mass that support young adult patients. There is still so much to be done. I am just putting my story to the side.

If you are coming to this blog looking for solace, please use the search tool for some key words: parenting, body image, friendships, identity loss, grief, daily life, gratitude. I have also included a timeline of my treatment at the end of this post if you are wanting to know what different things were like for me.

Wishing all of you peace, health and love.

– Lani

If you want to hear my experiences of different phases of treatment my timeline was roughly as follows:

October 2009:
diagnosis

November 2009 – February 2010
chemo

March 2010 – April 2010
mastectomies and recovery

May 2010 – July 2010
radiation

July 2010 – presentre-entry

November 2009 – November 2010
Herceptin

October 2011 – May 2012
reconstruction

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Shehecheyanu

06.16.2013

The Shehecheyanu blessing (Hebrew: שהחינו‎, “Who has given us life”) is a common Jewish prayer said to celebrate special occasions. It is said to be thankful for new and unusual experiences.[1] The blessing has been recited by Jews for nearly 2000 years. It comes from the Talmud. — from Wikipedia

During the six months in between my diagnosis in September 2009 and the day I got re-staged after my mastectomies in March 2010, I pondered my mortality on an almost daily basis. My oncologist was never less than honest with me, so I knew the facts on the ground.

If the chemo didn’t work, my stage III aggressive cancer gave me a 10% chance of being alive in 5 years. We wouldn’t know how well it worked until they surgically removed the cancerous breast and did a pathology study of it.

When she gave me this dire news, one of the first dates I calculated was my eldest daughter’s bat mitzvah, about 3 1/2 years out.

I needed the chemo to work. If it didn’t, I very likely would not live to see that day. If, despite failed chemo, I managed to hit the outside range of the life expectancy and make it to that day, I would very likely be seriously ill: the mom doing a hora in a wheelchair.

When I suffered side effects, when I really felt like I could not continue after the allergic reaction in the 4th dose, when I thought I could not endure any more assaults to my poor system, I would think about these odds and how much I needed to change them, and I would climb back in the chemo chair and subject myself to another round of hell.

When my pathology report came back, I was re-staged as Stage I, dramatically changing my prognosis. My 6 cm tumor had melted away to less than 1 cm, giving me a 90% chance of living 5 years.

IMG_8094

Last weekend, I got to see the day that frequently preoccupied my heartbroken ponderings of my mortality and inspired me to persevere.

The prayer referred to at the start of this post, the shehecheyanu, is one that we say any time we feel gratitude for a moment, particularly for firsts.

I had been told by other parents that I would not believe the unbridled joy and pride of seeing my daughter through this first rite of passage.

Family

They were right. In addition to my awe for the young woman she is becoming, I felt like the day was one enormous shehecheyanu. I did not take my presence for granted. Alongside the joy and pride I felt in my daughter, my heart was overfull with gratitude. Throughout the weekend, the prayer would play like a soundtrack in my mind, bringing tears to my eyes.

Blessed are you, Lord our G-d, who has granted us life, sustained us, and enabled us to reach this occasion.

And to this I say, Amen.

 

 

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The Chatter About Jolie

05.19.2013

My bloggy friends have really hit some important notes about Angelina Jolie’s prophylactic bilateral mastectomies, a decision she made public in a recent editorial in the New York Times.

Jackie called out those who were judging her decision.

Marie wrote a good explainer about the BRCA gene and why its presence might lead to such a choice.

Nancy took up the issue of gene patenting and how the prohibitive cost of the BRCA test limits women’s choices.

Philippa reminded us of the stark global inequities in breast cancer care, telling some stories from Sri Lanka and Timor.

What could I possibly have to add?

angelina_jolie_13

Like my friends, I was asked by many to offer my opinion about Jolie’s choice. (I fully support it.) But since I have been hanging back on blogging, I was delighted to know so many smart and articulate people who cover the big issues when these Cultural Moments in Cancer happen.

Something struck me, though, amidst the media frenzy that has been less central to the ensuing conversation.

Women’s self-hating chatter about a radical surgery.

First there was a BRCA positive celebrity on an entertainment news program who talked about anticipating her prophylactic mastectomies. She told the interviewer laughingly:

It’s like a deluxe boob job!

Here is another exchange from a Facebook thread. Both women are educated –– Woman A is a doctor –– but the attitude is the same:

Woman A: I was tested!
Woman B: Were you really? It’s a little bit of a game changer once you realize you’re in any sort of high risk group, isn’t it?
Woman A: It was for me. I’m not willing to let a modifiable risk end my life. And, I’d have gotten new tatas…

 

Each time, my stomach dropped. This trivializes a body-altering operation.

I had a preventive mastectomy. A tumor presented in one breast, but I had to decide about whether to remove the healthy one as well. After genetic counseling, I was tested for the BRCA genes as well as a known mutation prevalent among Ashkenazi Jews. My genetic tests revealed no known genes, but the multifocal presentation of the tumor in my breast, my young age, and my ethnicity led four clinical oncologists to suspect some unknown genetic origin. Although I did not get a definitive risk like Jolie –– 87% is pretty clear cut in the medical world –– all these doctors recommended a prophylactic mastectomy.

I went ahead with the surgery. I got reconstruction, although mine was more complicated than Jolie’s because of the radiation I received as part of my treatment.

I have the new tatas that the women seem to joke about.

And you know what?

I really miss my old ones. We had a history together. I nursed three children with them. They fit my middle aged body. They felt much more than the ones I have now.

As I tend to do when something in CancerLand raises my ire, I posted the following on my Facebook page:

Just stop

As you can see, this got a lot of “likes.”

On that thread, somebody generously shared the following:

Immediately prior to formal diagnosis (i.e., after the lump was discovered but before the second biopsy), I found the idea of a “deluxe boob job” (and tummy tuck, woo hoo!) to be very comforting. When talking to friends, that’s how I framed it, because breast cancer was much easier to talk about in those terms.

I really appreciated this honesty. It gave me insight into this “boob job” framing.

And here is what it reveals about our culture and breast cancer:

It is more socially acceptable for us to dislike our bodies to the point of wanting to surgically alter them than it is to grieve the loss of identity and sensation that mastectomies require.

I notice that folks are not chatting as playfully about the oopherectomy (ovary removal) that Jolie plans to undergo. There is no soft-pedaling that operation. An oopherectomy means a sudden, surgical menopause. Friends of mine have described it, and it is not pretty. There is no femininity-preserving (or, to hear some women describe it, femininity-improving) reconstruction.

So my question is:
When women with ambiguous cancer risks undergo preventive mastectomies, how much does their own culturally acceptable body-loathing play into that “choice”? Can we call it a choice when there are obviously such strong messages that downplay the loss and pain and overplay the body improvement aspect of this surgery?

For information on genetic risks and breast and ovarian cancer, please visit FORCE: Facing Our Risk of Cancer Empowered.

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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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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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