Archive for August, 2011

Monsters in the Dark

08.21.2011

My son is four. He is at an inquisitive age.

“Mom, which of these drawings do you like the best?”

“Oh, I don’t know. I guess the middle one.”

“Why?”

This is the way our conversations go these days.

He is a curious person and is trying to make sense of the world. Even when the world doesn’t always make sense.

“We eat some fish because they are mean. Other fish are nice so we keep them as pets.”

Um, well… Not exactly.”

The other night, I was putting him to bed. We were doing that parent-child thing of trying to express the enormity of our love for each other.

“I love you to the moon and back again,” I said.

“I love you to infinity and beyond,” he said.

I love you longer than forever,” I said.

He became thoughtful.

Mommy, you can’t love me after you die.”

I smiled, pleased to have an opportunity to teach him something about the nature of love.

“That’s the amazing thing about love. My love for you is so strong it will live longer than me. You will feel it inside of you for the rest of your life, even if I’m not here.”

He grew earnest.

“But your heart will stop beating when you die. You can’t have love without a heart.”

“Love doesn’t just live in my heart. My love for you will continue on in your heart.”

Then he burst into tears and threw his arms around my neck.

“Mommy, I don’t want to be the little boy whose mommy died.”

I embraced him, stunned into silence. I looked for words of comfort.

Cancer has stolen the easy assurances I gave my girls when they were his age and coming to terms with death.

My children have no illusions about the mortal dangers of cancer after losing their uncle to it two years before my own diagnosis. Parental death is also within reach of their imagination. They know their own father was only three when he lost his father to a different disease.

Death, once they can envision it, is not just something other people have to deal with. Consolation becomes harder to summon.

But I did.

“You know how I exercise to make my body strong?”

You run a lot,” he said enthusiastically.

“Yes. I do that because it makes my body strong so I can be here for you. I do everything I can to keep that cancer away. Do you remember how sick the chemo made me?

“Yes,” he said.

“Do you know when I felt tired of taking that yukky medicine, do you know what I would think about? I would think about how I need to be here to help you grow up. I would think about how much I want to see you become a young man. And how much I want to see your sisters become young women. And then I would take the medicine again.”

I paused and then asked a question he has heard a hundred times.

“What’s my most important job?”

“Taking care of me and my sisters.”

“YES! I will do anything to do that job and to keep doing that job. You are my most important job ever. I love you THAT much.”

He took in my words and we had a long snuggle as he drifted off to sleep.

Later that night, a heard a small fist knocking on my bedroom door.

It was my son, once again in tears.

“Mommy, I’m scared of the dark.

I let him in my bed and calmed him down. We held each other and fell asleep.

Because sometimes, that’s the only solace you can give.

 

 

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Our Language, Our Selves

08.14.2011

Twenty five years ago, I began a friendship that broadened my world. A French exchange student stayed with us in our home. I enjoyed showing her my 15 year old’s version of America for the summer. Soon afterward, I got to take a tour of her 18 year old’s version of France.

I spent two summers abroad with her family. My French became strong enough for me to enter the advanced French literature seminar in college.

But I haven’t been to France in over two decades.

J’ai beaucoup perdu.

This past weekend, a little bit of France came to me. I had another lovely visit with my French friend (that’s how she signed her letters back in the day and continues to sign her emails now).

Only this time, she brought her family.

I didn’t know what it would be like to try to summon up all that dormant vocabulary and grammar, especially after the number chemo did to my brain.

I’ll be honest, it felt a bit rough at first. Lots of misconjugated verbs and comment dit-on‘s.

My friend and I can weave in and out of all sort of versions of Franglais, but her two girls and husband counted on me for some French conversation. Not to mention my own family. My husband speaks fairly functional French but the kids needed to be let in on the action. I found myself playing the role of translator quite a bit.

But then, I crossed over to actually producing thoughts in French, to hearing myself what the song and rhythm of the language should be without having to overthink each utterance. Every time a synapse connected and a word came back –– pop!–– I wanted to do a fist pump.

Becoming plural — having a we to talk about –– was not the only significant change to my language in the past 20 years. As teenagers we spoke in singular tenses — je et tu — but now we are very, very plural.

In part, the gaps in my vocabulary reflected the changes in the world –– I needed words for “email,” “going online,” “googling.”

But the missing words also reflected changes in my own life. I need much more medical vocabulary now that I am a 40 year old cancer survivor than I did as a 20 year old college student with a Eurail pass and a backpack.

I have picked up some of the vocabulary from reading the blog Maison du Cancer and by tweeting with the amazing French survivors that we often refer to as les Cathies, Catherine Cerisey and Catherine Malhouitre. So I knew radiothérapie, chimiothérapie. But I needed some help describing consultations with le chirurgien. That word is a mouthful.

All of these words rushing forward, all of these blanks to fill in: it made me remember, once again, how deeply our language is connected to who we are.

Why, for example, is there no good French translation for “silly” but English is so impoverished when it comes to food that we need to borrow French words like gourmet and the even better gourmand?

There are whole swaths of experience that can be kept at bay when we have no words to describe them.

Which is, in part, why I blog. We share our stories and put words to the otherwise indescribable experiences cancer brings to us.

When we tell our stories, they are no longer invisible. We learn from each other and invent the words and images we need to feel seen.

Our stories become a part of a collective strength, and then we are no longer alone.

 

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The Surgery Which Must Not Be Named

08.07.2011

The date is now set for the first of my reconstructive surgeries. As has been my custom, I sent out a dispatch to my support people to inform them of the date and some of the needs my family and I will have.

But you know what I forgot to include?

What the surgery was for.

I got some concerned notes from friends, wondering if I had experienced a recurrence or morbidity from earlier surgeries. Was I BRCA positive? Was this an oophorectomy or hysterectomy?

As regular readers of my blog know, I usually lay things on the table medically. I am not typically coy about what goes on.

This omission was interesting. Why had I suddenly become so uncharacteristically shy?

Blogger friend Stacey has written about how awkward it is to discuss reconstruction –– sometimes even with your doctors.

Luckily, I have felt very comfortable with my docs.

Family, friends, and colleagues… well that’s a different matter.

Part of it, I think, is that people are not as presumptuous about the “correctness” of other phases of cancer treatment. When you tell folks you have to have chemo, the skeptics may, at most, ask if you had a second opinion. But once you assure them of your diagnosis, they only offer sympathy.

Breast reconstruction becomes infused with opinion. Political opinion. Medical opinion. Cosmetic opinion.

While not everybody states their views outright, they find ways to insinuate them into conversations.
I am familiar with this dynamic. It reminds me most of the kind of indirect (and sometimes quite direct) judgments I felt in conversations about childbirth and breastfeeding.

For this reason, I am going to provide here my personal answers to the FIQ’s in conversations about my choice to pursue reconstruction.

What are FIQ’s?

I just made them up.

Frequently Insinuated Questions.

So here goes.

Why don’t you just embrace your new body?

Yes, this is the body that let me live. But it is also a body of trial and grief. It is a body that reminds me of what I have endured every time I dress and undress, every time I wear a swim suit, every time I hug. My happiest post-treatment moments are ones that do not foreground my cancer experience. I would like to have more of that pleasant amnesia around my body itself.

I have been told by more than one person about women who embrace their mastectomied bodies by tattooing their scars. Cool on them. When people stare at you, you have given them something to look at, have changed the meaning of the stare into, “What an awesome tattoo.” I think that’s great.

But it doesn’t work for me. Aside from not being a tattoo person, I am not a candidate for tattoos, between the extensive radiation and the lymph node dissection which leaves me prone to infection. I sometimes get the feeling that I disappoint people by not being a badass tattooed survivor.

Why would you want to endure more surgeries?

I have my reasons. Of all three events in the Triathlon from Hell — chemo, surgery, and radiation — I tolerated surgery the best. It seemed to be the one place where my prior fitness paid off.

I don’t want  to endure more surgeries. But cancer often forces you to choose between crappy options.

The best preparation I have had for this aspect of cancer treatment is a game I played with my brothers growing up. We would pose gruesome hypothetical scenarios and ask each other to justify our choices, like, “Would you rather freeze to death or be burnt alive?”

Other women may not experience it this way, but for me, choosing between my mastectomy scarred body and more surgery is one of those would you rather scenarios with no right answer. Choose your pain: the accretion of small psychic insults for the rest of your life, or intense, short term suffering for a physical approximation of what you have lost. On the balance, my personal answer, after much self reflection, is that I would rather endure 9 months of surgery.

I do not judge other women for making different decisions. I wish I did not feel judged by others for my choice.

Why didn’t you just get reconstruction when you had your mastectomies?

If I had insisted, I could have. My radiation oncologist told me clearly that it would risk compromising the treatment and it would make for a lesser cosmetic outcome. My priority during treatment was to save my life. I figured I would deal with the cosmetic aspects at a later point, once I knew that is what I wanted to do.

The surgeons at my hospital recommended waiting 12-18 months for my tissue to heal after radiation. Delayed reconstruction has been psychologically hard, but the morbidity rates are lower than reconstruction on radiated skin. In some ways, it has given me an opportunity to live with a mastectomy body and have a clear sense of my own feelings about that. I will not have to wonder how it felt.

Are breasts really that important to you?

Growing up, I had a friend who was born with noticeable asymmetry in her face. Nobody questioned her and her family’s decision to get plastic surgery for her when she got old enough. Faces are part of how you present yourself to the world, how people see you and interact with you.

Later, my friend Josh had part of his arm removed to treat sarcoma. He wore a prosthetic initially, but found it cumbersome and finally decided to let everybody deal with their discomfort around his missing body part. He used humor to help put people at ease, like about the particular danger he would pose if he texted while driving.

So where do breasts fall on the spectrum of body parts? Do non-conforming breasts socially require surgical correction, the way that we all understood my friend’s facial surgery?

I imagine breasts fall somewhere in the middle, and different women answer that question differently.

Here is where I land. I don’t like choosing my clothing around my surgery. I don’t like the extensive strategizing I end up doing when it comes time to change in the locker room. I don’t like the sinking feeling I get every time I undress, no matter where I am. I don’t like the feeling of cuddling my children with prostheses.

I have spoken with enough women who have made different choices to get a sense of the trade-offs. I have no illusion of “becoming whole again.

But I have listened to other’s stories, and I have spoken with my doctors about the medical realities.

I know of a woman in her 40s who enjoyed swapping out different sized prostheses –– or wore none at all –– to suit her fashion choices and activities. I know a 90 year old woman who had a radical mastectomy in the 1970s who told me she never felt comfortable with her modified body. I know a small-chested BRCA positive woman who got prophylactic mastectomies without reconstruction and felt surprised at how much she missed having breasts.

There is no one answer here. But I would appreciate trust from people I know that this is the right choice for me.

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Attention!

08.02.2011

I’ve garnered a bit of attention for my recent post on Komen. Here are two media pieces that have come out in response:

USA Today

KIRO FM news radio

It’s a David and Goliath thing, us wee bloggers versus one of the most popular charities in the United States.

I started this blog, not to complain, not to agitate, but to educate and communicate about the social and emotional experiences of having cancer.

And the reality is, Komen is a big part of the cancer landscape. Because of that, they are an unavoidable backdrop of the social and emotional –– and dare I say medical ––  realities we face.

It’s not surprising, then, that the last Komen post garnered a my personal record number of comments and hits. As always, I learned so much from the comments and emails I received. I know it takes time to wade through 100+ comments, so I am going to summarize the main points here for you. I hope I haven’t left any out.

Komen dominates the cancer charity scene, to the detriment of other cancer charities –– and other cancer patients.

•   The lawsuits against other organizations who deign to use the phrase For The Cure™ are totally uncalled for.

•   The lawsuits are just the tip of an uncollaborative iceberg. Komen has not partnered with other cancer organizations, even when these groups are working to fund research on cancers related to breast cancer, such as ovarian or prostate cancer.

•    As one reader put it, Komen has become the “face of cancer,” so much so that people seem to think breast cancer is the only type of cancer. Women with thyroid cancer and papillary carcinoma report being showered with pink ribboned items from well meaning friends. People with cancer in more embarrassing body parts are stigmatized. And apparently Komen is a very touchy subject for childhood cancer advocates.

Komen is working from a limited (and outdated) scientific framework.

•   Komen has not updated its message, despite new knowledge about the biology of breast cancer. They continue to put their focus on mammography, an important but imperfect tool in detection. Detection, of course, is but one piece of the cancer puzzle. Missing from this formulation are prevention and cure.

•   Related to ignoring prevention, Komen, with its corporate partners, fails to scrutinize data about increasing cancer rates and the falling average age of diagnosis. These point to an increase in environmental toxins, such as those that go unregulated in Komen’s new perfume, which may contribute to the overall increase in cancer rates, as well as issues with food additives and obesity.

Komen has created a story of cancer treatment and survivorship that is not inclusive.

•   Komen’s emphasis on “beautiful” patients and survivors leaves a lot of women out. One woman says that the “perky pink” survivor stories do not reflect her experience. There is no room for depression, divorce, abandonment, anger — many of the negative but real things that come as a part of the cancer package.

•   Pink packaged educational messages actually work against the purported goal of “raising awareness.”

•   Women with metastatic disease have no place in the Komen version of breast cancer. This is consequential – not only for their experience, but for funding priorities.

The organization has lost its way.

•   Nancy Brinker’s salary and her apparent love of celebrity leave more than one reader suspicious about her true intentions: cure or profit? To put a finer point on it, what does it mean to pursue a cause wherein true success would put you out of a six-figure salaried job?

•   I do not want to spread rumors, but these tales came out with such frequency, I would be remiss to omit them entirely. There are a number of troubling stories, both told in blog comments and in private emails, about survivors being excluded from the organization for not raising enough money, as well as of local affiliates feeling disillusioned with headquarters. Moneymaking seems to have become the priority mission. I’ll leave it at that.

Consumers need to be smarter about where their dollars go.

•   The “armchair activism” of buying in place of doing good is a set up for all kinds of exploitation. A recently uncovered scam of a fake charity selling pink ribboned jewelery is only one example of how this can go wrong.

•   Unfortunately, tools like Charity Navigator just reflect the financial soundness of an organization. Readers named other cancer organizations that they suspect of playing these numbers as well.

•   If you want to support research, make a direct donation to a research institution.

___________

I am glad to know that folks are paying attention and asking questions. Unlike the brave shepherd David, I am not trying to bring down this Goliath. Maybe I’m naïve, but I believe that Komen has the potential to do the right thing, if they can address some of these issues in a real and meaningful way.

To be perfectly clear: we need dollars going to cancer research, support for low-income patients, and funding for survivorship programs.

All we ask is for this to be done with transparency, collaboration, and integrity.

 

 

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