Posts Tagged ‘body issues’
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?
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:
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:
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.
Tags: appearance, body issues, boobs, cancer culture, courage, essay, identity loss, reconstruction, social media, vanity
Posted in Treatment | 15 Comments »
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:
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.
Tags: appearance, attitude, body issues, changes, coping, daily life, gratitude, identity loss, parenting, survivorship
Posted in Survivorship | 1 Comment »
09.04.2012
As I process my whole cancer experience, I realize I cannot separate what I went through from the loss of my stepbrother two years prior to my own diagnosis. Sorting through my own trauma in order to heal, I have to go back before the date I was told, “You have cancer.”
This time of year is particularly painful for me, as it was the season of losing Jeremy. As the five year anniversary of his death approaches, I will post some of the updates I sent to friends and family at the time to share with you my firsthand accounts of that time.
We just got back from spending 10 days in the Bay Area, with the goal of being of as much service as possible to Jeremy and Beth [his wife]. I think we managed to help out, but it was a heartwrenching experience.
Not surprisingly, the situation with Jeremy was more complex once we got up close to it. The first thing that I needed to sort out was the state of the palliative care/hospice issue. As I indicated in my last post, I got our family on a plane as soon as I could manage after my dad called and told me that Jeremy was being moved to palliative care only, and that the doctors did not know how much time he had left. When I got there and talked to Jeremy, however, he was still talking about treatments and such, leaving me more than a little confused.
It turns out that he has two main doctors he is seeing right now, the pain guy and the oncologist. The pain guy is advocating for palliative care, and the oncologist is on the fence. So I contacted the marvelous advanced prostate cancer specialist here at the UW (Tia Higano) who has been consulting with me pro bono. I wrote her an email saying that I was kind of at a loss and did not have the expertise to judge what the right thing to do is in this situation. My dad and I spoke with her on the phone for over and hour, trying to summarize Jeremy’s treatment. She told us in a lot of detail the kinds of questions she would have about Jeremy’s treatment in making such a decision. The bottom line is, although the pain management has become the overwhelming issue, the door has not completely closed on treatment.
But the challenge of pain management cannot be underestimated. Jeremy is on high doses of pain medication, and still has a lot of what is called “breakthrough pain,” meaning that the pain breaks through the shield provided by the medication. Jer tells me that bone pain is particularly hard to manage. He was hospitalized during our visit to address breakthrough pain and swelling in his leg. Basically, his quality of life has greatly diminished, as his existence centers around pain management. Somebody has to be with him 24/7, supervising his medication, rubbing his hip and leg, reminding him to take care of basic things that he gets too distracted to remember. It is absolutely heartbreaking to see him suffering like this. On Tuesday, he has an appointment to get something called an intrathecal pump, which would administer meds directly into his spinal column, hopefully giving him quicker relief with less medication.
The miracle in all this is how, in the moments where his pain is under control, Jeremy manages to stay Jeremy. He has every right to be bitter and angry, but instead he wants to connect with the people around him in the most loving and authentic ways possible. [My husband] Adam spent a couple of nights at Jer & Beth’s, doing the overnight caretaking so Beth could get some sleep. (Jer wakes up frequently with pain issues throughout the night.) Adam had a chance to have some meaningful conversations during those wee small hours, and he expressed our awe at Jeremy’s determination to remain loving and resist bitterness. Jeremy basically said that if he doesn’t have a lot of time left, he doesn’t want to spend it being angry and pushing people away.
And, in fact, he seems to do the opposite. He and Beth have an amazing network of friends who come to help in every way they can. One day I came over, and he was getting a massage from a friend; another day, an at-home acupuncture treatment. This past Saturday, Beth actually had to turn away about 10 people who dropped by unannounced, because Jer was too tired to visit. Many of these friends told me about how much Jeremy has meant to them in their lives. He helped them climb mountains they were afraid they couldn’t conquer; he helped them contribute their talents to one of his many causes. He has inspired love and devotion in a lot of people.
But, outside of his family, no one is as devoted as his best friend, an activist with a kind of earn-enough-money-to-get-by lifestyle. He drove his vintage RV up from LA and is living behind Jer & Beth’s apartment building, helping Beth manage Jeremy’s care (which is more than a full time job), rotating on the night shifts, weighing in on medical decisions, making sure Beth doesn’t forget herself, and hauling Jer around San Francisco to his various appointments in the big RV. Driving and sitting are uncomfortable right now, so Jeremy gets to ride in style in the RV, where he can travel lying down, take naps between appointments, and have a snack. I told Jer’s friend that it absolutely tickles me to picture him going around SF (is there a more RV unfriendly city in the US?), finding parking, managing the hills, in that old RV. He replied dryly,”Well, the disabled parking permit helps.”
So what did I do in the face of all of this? I cooked, did laundry, walked the dog, watered plants, rubbed Jer’s sore hip, ran errands. I held Jer when he felt nauseous. I insisted that the nurses and technicians in the hospital sanitize their hands before treating Jer. I made calls to make sure that the CT scan taken at the hospital made it to Jer’s oncologist. I cooked some more, coming upon a granola recipe that Jer was particularly fond of, and given his nausea and weight loss, I was inspired to make multiple batches. It all seemed so insufficient, but it felt important to do something. I did manage to wrangle a little time to talk to Jer heart-to-heart. And I can tell you that my heart is broken.
Where things are at now: We’re hoping that the pump helps increase his quality of life. He is still receiving some chemo (in pill form) in the hopes that the cancer will respond (although he has not responded to any chemo so far). There are still 2 treatments he might try if he is strong enough: an intravenous radioactive isotope that Tia told me has had a “Lazurus effect” on some of her most dire cases and, if he is ever strong enough again, the bone marrow transplant. The isotope treatment would only be able to send his cancer into remission, but if it helped him gain strength and time, it might allow for the bone marrow transplant to take place, which could theoretically provide a cure. His oncologist is reluctant to use the isotope treatment because he has lost 2 patients from it who ended up with brain hemorrhaging. But Tia (who, I might add, is reviewing his oncologist’s promotion case) thinks it could be managed with vigilant monitoring of his platelet count.
At the same time, we all realize that these options are not great. Jer and Beth are going to start investigating hospice programs nearby. Jer is definitely walking a fine line right now, and we all recognize that another big setback could make even these remote possibilities of treatment recede into the background for good.
Thank you for all your loving and supportive messages. I know there isn’t a lot to say right now, but just knowing that you all care about us means the world right now.
Tags: body issues, changes, coping, courage, end-of-life, essay, gratitude, Jeremy, pain, support
Posted in End of Life | 2 Comments »
05.07.2012
I haven’t read Susan Gubar’s new memoir about her terminal ovarian cancer yet. The famous literary critic explained that she was motivated, in part, by a problem that Virginia Woolf’s generation of women writers had failed to solve: telling the truth about the experiences of a woman’s body.
I resonate with this motivation. As I explained in an early blog post, I have always found the silences around our bodies to be a strange form of culturally mandated dissociation. We all have bodies. They all have feelings and experiences, but we are somehow raised that it is impolite to discuss them.
The loneliest moments I have ever experienced have been in unanticipated, unrecognizable corporeal suffering. Somehow, putting words to these sensations and having others recognize them makes me feel less alone by acknowledging an important and essential aspect of our common humanity.
So here I am, having another intensely bodily experience. After two years and seven months since my diagnosis, my cancer treatment is coming to an end. My Medical Body is becoming a Private Body again.
Let me rewind a bit for you and explain. Early on, it became clear that Medical Bodies are not granted the normal respect granted to healthy bodies.
During my first diagnosis meeting with a team of doctors and residents, I heard the information about my disease: staging, tumor type, treatment plan. Needless to say, I was in shock.
Then the team wanted to “palpate my tumor.” I was to remove my hospital gown, stripped from the waist up, and sit on the exam table while, one by one, the doctors basically felt me up. I caught eyes with my husband, as we were both struck by the new bizarro world we had entered. This activity would have seemed inappropriate and lacking dignity just days ago. Now I was expected to endure this as a procedure, allowing the doctors to individually assess the location and size of the cancer.
This was only the first of many insults to my body. They are too numerous to list, but I will name a few to give you a flavor.
• The prolonged pain after my port placement that my surgeon responded to as “no big deal.” (I later fired her.)
• The way some nurses abruptly flip on lights in the wee hours during a hospital stay so that they can “take your vitals.”
• The way your bald head causes some cold-hearted people to shun you because you represent disease and mortality.
• The way some chemo nurses will “push” your infusion at the end of their shift so they can go home, even though it hurts.
• The way strangers simply appear without introduction when you are half naked on the radiation table.
As my reconstruction has progressed, the procedures have gotten more intimate.
Really. It is not possible to be any more flat-chested than this.
First, I went from my truly flat-chested body to one with some roundness. Then, I switched out hard tissue expanders for softer implants.
Now, the most intimate surgery of all is on deck:
Nipple reconstruction.
It is so so private to talk about nipples. I can barely stand it.
But the awkwardness also marks a welcome return.
My Medical Body is becoming a Private Body again. And I am so thankful for that.
Tags: appearance, awkwardness, body issues, changes, doctor-patient interaction, reconstruction, straight talk, survivorship
Posted in Survivorship, Treatment | 24 Comments »
04.02.2012
Picture what it is like, being in the hospital.
The sterile, enclosed environment. The fluorescent lights, the rooms designed for medical treatment, not for any kind of aesthetic pleasure. The machines ominously whirring and bleeping. The periodic sounds of crisis in the hallways. The shadows of mortality and frailty. The bland, institutional food. The strangers who come in, announce their names with varying degrees of engagement, perform tests, invade your body, give treatments that cure but hurt. Isolation from family and friends. Pain, discomfort, frustration, uncertainty, followed by hurried interactions filled with obtuse, technical language.
What is the opposite of being in the hospital?
Cancer retreats always seem to provide an answer to this question. I’ve been to a few now, so let me explain.
Life Beyond Cancer said that the opposite of a hospital is a spa-like retreat. We had a program of activities at a calm and self-directed pace, delicious healthful food, companionship, inspiration, and activities to soothe and heal the body.
Little Pink Houses of Hope sets its retreats at the beach: fresh air, sand, the expansive ocean, and sunshine. Our days were filled with art, outings, no financial stress and quality family time.
This past weekend, I had the pleasure of going to the OMG! Cancer Summit For Young Adults with StupidCancer.com.
(Faithful readers may remember that they are the group with whom I ran my first post-treatment half marathon.)
Stupid Cancer has a different answer to the Opposite-of-a-Hospital question:
Vegas, Baby!
Photo by John Sabia
Literary theorists talk about the human need to turn the World Upside Down (WUD). Think Charlie in the Chocolate Factory or Dorothy in Oz. It’s a way of regaining equilibrium, particularly after a stressful situation.
My belief that cancer retreats seek the Opposite-of-the-Hospital to help us regain equilibrium.
Vegas definitely turns the hospital world upside down. Raunchy, smoke-filled, hedonistic, youthful, indulgent, living in the moment, sin, impulsiveness, swaths of people, over-the-top spectacles, the cacophony of music and slots.
More importantly, the conference itself was terrific.
Workshops focused on a combination of social and emotional issues relevant to young adult survivors: sexuality and body image, dating and relationships, spirituality, links to the environment, careers, insurance, advocacy.
Then we would do things like dance to a DJ in a rooftop nightclub.
Screenwriter Will Reiser spoke with Stupid Cancer founder Matthew Zachary on Saturday after receiving the first ever Extreme Survivor Award for 50/50, his film about a young adult diagnosed with cancer.
Will Reiser & me. He’s a super nice guy.
That night, we had a midnight showing of 50/50. It’s a great film that captures many of the truths of young adult cancer, despite the few inevitable Hollywood touches.
Although I had seen it before, there was something unspeakably wonderful about sitting in a room full of young adult cancer survivors. We bonded through knowing laughter and deeply pained tears of recognition. At the end, my companions and I had filled our table top with tissues. We needed no words to explain the sobbing that overtook so many of us.
But tequila helped.
What happens in Vegas gets posted on the Interwebs. But it was a moment worth remembering.
I was invited to speak on a panel on life after treatment.
(YouTube video forthcoming…)
My friend Naveh says with my purse out front it looks like I walked in off the street
and strolled up on stage saying, “Let’s do this thing!” then went shopping.
When you meet other young adults who have been through cancer, you can tell your back-story in two sentences. In normal life, it takes paragraphs to explain a cancer experience. Even if you get that far, it never adequately captures the experience.
Starting the conversation so deep into something that has profoundly altered your life allows you different kinds of conversations and connections, the kind that deepen your own understanding of your self and something that has touched you at your core.
That kind of experience, without a doubt, is the World Upside-Down.
Tags: advocacy, attitude, body issues, changes, coping, daily life, gratitude, hope, identity loss, mental health, self-advocacy, stupid cancer, support, survivorship
Posted in Survivorship | 14 Comments »
