Archive for the ‘Treatment’ Category

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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Posted in Treatment | 28 Comments »

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 »

Schooling the Resident

08.11.2012

I had my (almost) 3 year follow up appointment this past week.

The good news: NED.

The bad news: The life of an oncology patient is still often beneath my dignity.

I arrived to the clinic early. Since I am a patient in a teaching and research hospital, this often means I get to help the new residents practice their clinical skills. I am an educator, so I believe in the value of this kind of training.

It’s just sometimes hard to take when I have lost a night’s sleep worrying about impending lab results.

So the newbie doctor went through his clumsy interview. I confess I was not a patient patient as he (re-)explained many aspects of my treatment and the side effects I am experiencing.

I thought, Oh really? The shooting pain down my arm might be nerve damage and lymphedema?
Yeah. I know. I’ve been going to physical therapy twice a week.

He proposed Cymbalta for the nerve pain. I brusquely told him that I am a Side Effect Queen.
Drugs are seldom worth the trade off for me.

I could tell he wanted me to like him and put him at ease, but I didn’t really feel it was my job. He has to get used to us oncology folk.

Then my real doctor came in and did her thing. I was relieved. She too wanted to talk me into the Cymbalta for my nerve pain.

Did the Cymbalta people take you out to a nice dinner at the last ASCO meeting? I joked.

No, they don’t make enough money off of me.
She knows how to roll with me. This is why I love her. She continued, joining in on the snark.
This is a low dose. It’s like licking a f***ing pill. If you don’t like it stop. But it won’t hurt you to try and it could help.

I turned to Junior Doctor and said, Watch and learn from the master.

I agreed to try the Cymbalta.

As my doc continued her thing, I noticed that the young one had started fiddling on his iPhone.

I felt my heart rate go up. A half dozen call-outs flashed through my mind.

Really? That camera is pointed right at me dude. Are you live tweeting your clinics? What’s the hashtag?
I can tweet it too and let my followers weigh in. Oh are you Instagramming? I’m pretty sure that violates HIPAA.

When he left the room for the exam portion of the appointment, I said to my doc,
Dude was on his iPhone. Not cool. You need to say something about it.

I will, she assured me.

After the appointment, I blew off some steam by posting about the incident to my social media peeps.
They came up with some snappy comebacks too:

Dr. Douche, does the AppStore have anything to help me find a better oncologist?

Hi. Is it Doctor X? Hi Dr. X. I’ll just take that from you: It’s distracting. You can pick it up from me at the end of my consultation.

So sorry. Is my medical appointment interrupting your texting?

This cap fest was gratifying in a sophomoric kind of way.

But I realized what I really wanted to do was get him to realize that this meeting was not about him.
To give him a good dose of empathy.

Listen, Doctor. I am sure you are a smart guy and have done well in school and studied hard to get to where you are.
Can you imagine that I did that too? I built my life, was moving forward, taking care of myself, my career, my family and then BAM! CANCER.

You are new to My Cancer but I am old hat now. I have been doing this for 3 years. Three effing years. Every time I come to one of these appointments, it feels like a lot of bull. All the pain, all the fear, all the bad times come back to the surface for me as I sit in this office, waiting for my latest news.

Treat me with humility: you don’t know the extent of my experience. Offer me information with the understanding that I may have heard this before: this has been my life. Don’t expect me to reassure you: that is not my job. I have a lot on my plate. You need to get your affirmation elsewhere

Oh, and also?

Put away that damned phone.

I realize that NED gives me the luxury to bitch about these details. I am grateful.

I hope that my griping helps those of you who are in treatment or are dealing with long term disease.

Epilogue:

I emailed my doctor to make sure she followed up on the phone. She did. Doctor Junior is sorry and won’t do it again.

I kicked the Cymbalta after one dose. It made me unspeakably nauseous. The Side Effect Queen continues her reign.

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Posted in Survivorship, Treatment | 15 Comments »

Private Body/Medical Body

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.

 

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Posted in Survivorship, Treatment | 24 Comments »

Pinned to the Mat

11.07.2011

On the day of my diagnosis, Cancer pinned me to the mat.

Death stood near and started his slow count to 10.

Through my blog, I gathered a crowd around me to watch. I was bottom/down, and I wasn’t going to let this bastard win.

Would I come back up? Or would this be the end of me?

Chemo. Surgery. Radiation. Herceptin infusions. Those were my moves for fighting back.

Each one brought its own injuries.

The crowd gathered around, cheering me on to persevere and triumph.

Every time I was pinned in another headlock, Death would mockingly resume his count.

1, 2, 3, …

I won’t see my children grow.

… 4, 5, 6, …

I can’t leave my husband alone.

… 7, 8, 9, …

I’m too young to die!

And up I would come, elbow-to-elbow with my evil opponent, Cancer.

The crowd would roar.

* * *

But that match is over. Death has moved on for now.

I am left patching injuries, healing wounds, regaining strength.

There is less to see. Convalescence does not make for a good spectator sport.

The drama is gone, as I make slow march back to some version of my life as I once knew it.

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Posted in Survivorship, Treatment | 12 Comments »