Posts Tagged ‘social media’

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 »

Transitions

12.30.2012

Believe it or not, I was a social media dabbler before I started this blog three years ago.

I even live tweeted my mammogram.

Team Pink Ribbon

spa ha

holy shit

The difference? I had about 30 followers at the time. There were no replies, no retweets to my story.

I was tweeting into the void.

Once I started my blog, I took my social media dabbling to a whole other level. I was just a gal with stage 3 cancer, a 10% chance of living 5 years, and nothing much to lose. So I opened a second twitter account under the name “@chemo_babe” to keep my identity hidden.

I got some traction in the twitter world on the eve of my second or third chemo. I was besides myself with anxiety, having suffered terrible side effects from the first dose alone. I found the hashtag #blamecancer, started by Drew Olanoff. Drew was moved by my tweets, started retweeting me, rallying others to support me. It was a phenomenal experience in the midst of a lot of suffering, this sudden embrace by total strangers who showed compassion for my plight.

To be sure, my blog has been a lifeline. Paradoxically, the anonymity I started out with helped it to be so. Hiding behind this persona, I could be as brutally honest as I needed to be. I spoke truths that resonated with others and helped me connect with other patients, caregivers, and doctors. It has been an education that I truly value.

Over time, I found the amazing #bcsm community. With the coaxing of supportive friends, I gradually “came out,” using my first name and eventually my second. I started getting media attention, locally, nationally, and even internationally. Soon everyone who could google  knew that ChemoBabe was Lani Horn, just as anybody reading Marvel Comics knew that Superman was Clark Kent or Spider Man was Peter Parker.

When I finished my last procedure this past May, my old twitter pal Drew sent his congratulations and tweeted, “Are you going to change your twitter handle now?”

Then answer at that time was no. I have built a community through this identity. I have thousands of twitter followers and Facebook fans, tens of thousands of blog hits. Cancer was still a central part of my everyday life, as I battled fatigue and other side effects, working to pick up the pieces of my life.

That was May. Now it’s December, and I woke up last week feeling like the answer to Drew’s question had changed. Yes, I tweet a lot about cancer. But I also connect with knitters, parents, and writers. I livetweet awesome, tragic, and inane cultural events along with my twitter pals. “Chemobabe” seemed too narrow and burdened by the past to be my twitter identity.

So I went back to my old, hardly used twitter account and hijacked that name. I am now @Lanisia, a nickname my uncle still uses for me. It’s a name I made up when I was 3 and I announced to my stepfather that I was actually a lost princess.

“What’s your name, Princess?” he played along

“I am Princess Lanisia,” I said with as much royalty as I could muster.

My old pretend name thus supplants my newer pretend name. Lanisia takes over for ChemoBabe from here on out. All of this superheros, princesses, and make-believe seems fitting for the ephemeral, electronic world of blogs, tweets, and status updates, where bonds are made, experiences shared, and heartfelt truths are told.

 

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Posted in Media, Survivorship | 11 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 »

Remembering Irene

05.29.2012

My blog has connected me to people all over the world. We develop friendships around common issues: cancer, treatment, grief, and loss. I met Irene when I was in treatment and did my Baldacious Babe Contest. Irene appreciated my sense of humor and was quick to join in the fun.

 

Irene lived in Switzerland. She blogged about her Stage IV breast cancer meinbrustkrebs.blogspot.com. I don’t speak German, but I loved that one of the categories for her cancer blog was “absurdes.” This speaks volumes about her perspective on things.

Her last post is from the May 5th. She was writing about a  holiday with some friends some days ago in the Provence in the South of France. She had a great time, but already a lot of problems with her stomach when eating, saying it was about time to contact her care team.

This text was written by Beat, her husband, and is the last entry on her blog. It was translated from the German by Katrin S.

You are not here anymore. Now it is on me to finish your blog. This is not what we planned! I can imagine your eyes twinkling, hearing my objections. I can hear your pointed remarks.

Tuesday, 1st May 2012

We are setting your emergency bed. You haven’t used it that often, I do remember now. This bed is now your “nest”, you are saying. I hope you will be fine after some days of rest. I am cleaning up our balcony and preparing it for the summer. You are very happy about the new look.

It is weird to sleep alone. You, on the other hand, are never alone, being in good company with our both cats. They seem watching over you…

Wednesday, 2nd May 2012

You are calling your care team from the oncological unit:  From now on you get a smaller dose of Tykerb; plus a visit on Friday. We are relieved about that. I am working while you are in the same room, sleeping in your nest. It is nice being with you. Everything’s quiet.

Thursday, 3rd May 2012

I will deal with tonight’s gathering of our friends B. and J. alone, you are insisting on that. Tomorrow evening’s invitation at our friends P. and U. is postponed to later. I appreciate the relaxed evening with B. and J. It’s good to be away, but the way home goes far to slowly!

When I get home, everybody is sleeping.

Friday, 4th May 2012

It is a wonderful morning.

Taxi driving into the oncological unit of the gynecological hospital in Triemli. A good-humored young Muslim with a big bushy beard is driving. We could be in Cairo…

Dr. St., is explaining us how to proceed. We now know, that the liver is the main problem. Tykerb is stopped right away. You should strengthen and recover first. Ms. B. is shepherding you and me. We feel safe and in good hands. You look satisfied. You get a dose Zometa.

Photo: Irene Gattiker, 4th May 2012

Afterwards we go to the tram station by foot. We are strolling slowly home, enjoying the blue sky and the sun. You say your body is like a big construction area now, where here and there work is done; but the house will never be finished.

Saturday, 5th May 2012

I am leaving early for work. As agreed I am back at noon. You take a hot chocolate with bread before going back to your nest. I think your skin starts getting yellow. Of course you want me to find the shade of the yellow with the colour charts. Pantone 156 hits it quite well.

You are still so tired. In the afternoon I am preparing the summer canvas chair in our big room, so you can lie there also. Risotto with asparagus and strawberries. Than you go back to your canvas chair and we are listening to music. While Dylan’s “Blood on the Tracks” plays, I am just crying.

Tomorrow you will be better. We have had this before, we will make it. It just needs time etc etc.

I am suspecting something may be different, but I don’t want to know. But you already do.

Sunday, 6th May 2012

A tired Sunday, also for me. You are sleeping sometime in the big room, sometime in your nest. I am looking forward to the dinner I have planned. So I am spending the afternoon in the kitchen.

In the evening you are eating just a tiny little bit. You go back to your nest.

Monday, 7th May 2012

You are so weak. You are sleeping a lot. I have to go to work.

I am not feeling well. I am always thinking about how you are lying at home. At noon I go home right away. Hot chocolate with bread.

In your eyes I can see a hint of yellow. Your nostrils are bleeding. Your fingers are red, because you scratch your nose all the time. I ask you if we should go to the hospital. You refuse.

Cleaning postponed things: you have to sign our tax bill! It is difficult for you to sign it. I am getting loud: Pull yourself together! Your normally beautiful handwriting is spidery. I have the feeling something bad is going to happen.

You are not very hungry and want an omelet. It fails. I am becoming desperate and angry and throw the burned omelet into the garbage. I am barely managing the scrambled eggs, decorated with strawberries and creme fraiche. You say: It is not nice to live like this.

I am out of my depth. I have to admit: this is the end. I am feeling helpless and totally over-strained.

I barely sleep, listing to your breath. Every time you are groaning or turning I am rudely awakened.

Tuesday, 8th May 2012

You are very weak. The breakfast (hot chocolate with bread), you barely manage eating it. Back to the nest. I call the oncological unit and describe the situation. They prepare a room right away. I call an ambulance.

You absolutely want to have a shower. I am putting a chair into the shower stall, swearing. Pighead. I am holding you and together we are tumbling under the shower. I am swearing. You barely can stand up from the chair. Finally I can make it to put your clothes on and bring you to the big room. There you are curling into the canvas chair, dozing. Directly one of the cats is laying next to you. I am waiting for the ambulance. The bag with the clothes was packed by you some time ago…

The ambulance women are putting you on a carrying chair. You have such big eyes. When questioning things you’re just nodding.

And when you finally are in the hospital bed, you slowly start relaxing. Hardly breathing. Everything will be fine, I think, you are safe now.

In the afternoon Dr. St. confirms what I was suspecting: your life is coming to an end. She is explaining what is going on now. Crying, I am telling it to you, you already knew. Also Dr. St. is talking to you and saying goodbye.

In the evening I go home just to feed the cats, have a shower, cry, pack my clothes.

Your nest is empty.

Back at the hospital. Next to your bed, I am putting mine together. I am installing myself for the night in “our” room.

I cannot sleep. I am crying, listing to your breath. I have to look at you again and again, holding you, kissing you. In the break of dawn you are with me for a moment, your eyes are looking at me. I am asking, if you are afraid. You are shaking your head. I am asking, if you have pain. You are shaking your head. Than we are kissing really solidly, you are here. Then you are drifting away.

Wednesday, 9th  May 2012

Your mother is watching you in the morning and I am going home. Feeding the cats, showering, doing the laundry, sobbing.

Then back to the hospital. You are sleeping, turning from time to time, it seems you are quite relaxed.

In the evening your friends I. and P. are taking over the watch and M. is also coming. I am feeding the cats and looking for the clothes you are going to wear when you die. It will be the clothes and shoes from our wedding. (Katrin adds: it was a boldly patterned, very colorful, simple, beautiful dress)

When going back to the hospital, the heavens are cloudy. You would have liked it. I am calm. I hope it will be our last night together.

Your friends are welcoming, informing me how it was going. You are breathing heavier than before. The attendant Ms. W. is explaining, what is going on now and what her duty will be. P. is coming back around 9 pm. I am happy that I am not alone. Whispering, we are talking about this and that. Slowly, it is getting dark in the room.

As you were still heavily breathing around 10 pm, it is time to call Ms. W. She is asking me, if we are ready for the last stretch.

We are.

Ms. W. explains in detail, how to go this last distance together. She is radiating so much love and deep respect, that I am feeling safe.

I am holding your arm, am very close to you and just telling you about the times we were hiking on the beautiful island Naoshima. I am telling you again and again, that you can go, that everything is ok. At around 10.45 pm your breath is getting lighter, irregular. You open your eyes a little bit, but there is no more sight.

And then – at last – you are not breathing any more.

It was exactly how you wished.

I keep you for a while. We are saying goodbye to each other. The doctor certifies the death at 11.05 pm

Then I am alone.

Now they will wash and dress you. I don’t want to see that.

I am going to the lobby to make the most important phone calls. Your friend C. is coming right away. We are waiting together. It is over. The presence of C. is relaxing me. I am releasing and feeling a big exhaustion.

Then finally we can see you.

My love, you are so beautiful.

C. is taking me to her home. We have a beer together. I am sleeping in a nice, strange room.

Very early I awake, there is fog laying over the town.

My dearest, so this is how your story ends, our common story. You always said you had a great life with me.

A small part of your life, our life, is laying here on this blog, strung like a pearl necklace. We can again and again read and remember. Crying, astonishing, laughing.

You arrived, I am entering reclaimed land. Caught in a net that you tighten so carefully.

Thanks, friends, for everything.

It was exactly how Irene wanted it.

Friday, 11th May 2012

Venus glows on the evening sky, Jupiter is gone.

My love,

some weeks ago you wrote into your diary:

I am neither here

Nor there

Not where you are

I am just

Gone…

I miss you so much.

Your Dearest

Beat

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Posted in End of Life | 12 Comments »

Only Connect

03.08.2012

Today is a sad day for some of my blogger buddies and me. We were scheduled to head to New Jersey to have a big party at Rachel’s.

I am sharing a tale of comfort and connection to honor what was supposed to be.

The weekend Rachel died, my friends and I did an online vigil, waiting to hear news of her latest hospital stay. As a result, I did not stray far from my phone, anxiously awaiting the latest updates from my friends.

In that unholy modern way, I was doing many things at once: hovering over my devices for news, managing my household, playing online Scrabble, messaging other friends –– simultaneous gravity and frivolity.

Somewhere in that mix, I had an exchange with my twitter friend Kay Gardiner. She was going to be teaching a knitting class in town with her co-blogger, Nashville resident Ann Shayne. Would I be interested in assisting with it?

As Rachel was slipping away, there was a certain kismet in Kay’s invitation. I had learned to knit two summers ago when I finished with treatment. I am a terribly impatient patient and had been ordered to rest. Knitting gave me a version of stillness, since the real kind does not come naturally.

Soon afterwards, Rach started a new chemo regimen, causing her hair to fall out again. She became a favorite of mine to knit for. We treated new hats like a shopping outing. We would look through patterns online, and I would text her yarn choices from the store.

We called ourselves snood sisters.

Rach models the anti-asshat

This odd juxtaposition of experiences –– impending loss, unexpectedly becoming an assistant in a knitting class –– made sense somehow in the weird world of the internet.

Then Rachel died. I was distraught.

Soon after, Kay sent me the pattern for the class. It was a blanket Kay had designed to raise money for Japan in the wake of the tsunami. The pattern called for Sarah’s favorite yarn. Sarah is a knitter too. She and Rach were quite close.

This all makes sense. A blanket designed to help heal a tragedy. A blanket to knit in the wake of Rachel’s death with Sarah’s favorite yarn. A blanket, comforting and cozy. Yes, this makes sense.

As I have written, the grief has been hard. Nobody in my everyday life sees my loss. It lays on the periphery.

After I received the pattern, I set out to work. When I felt sad, I would knit. I thought of how Rachel would have liked it. I wondered what Sarah would say about the colors. The blanket made me feel close to my friends.

These squares are for the Friendship Quilt

Fast forward several weeks. I am at the knitting class. I meet Kay for the first time. Kay and I connected because of knitting, but also because she lost her husband to cancer. She knows illness, grief, and loss. And Rachel would like her, because she also knows snark.

Kay is a mom and a New Yorker and as fantastic of a person offline as she is on.

After we set up the room, people started to stream in. Kay and Ann hadn’t capped the enrollment, so the room filled up. Knitters came from as far away as Texas, New Mexico, Georgia, and Kentucky.

Kay and I took out our phones in an attempt to simultaneously tweet each other.

Dueling iPhones

After we posted the tweets, a woman named Deena came up to me. I had met her before class. She was an avid sock knitter from Texas, sporting a lovely lacy pair.

“I thought you looked familiar! I follow you on twitter. I love your blog! It has been so helpful to me.”

She explained that she was friends with a woman in treatment. From the details, it sounded like Deena had been her rock and resource.

Then Deena said, “I am so sorry about your friend Rachel. I had just found her blog, and what a voice! What a writer!”

I started to tear up because I realized it was the first time I had been offered words of comfort in real life by somebody who knew who Rachel was, who she was to me and the whole breast cancer community.

Oh, how I had needed that.

Deena saw my tears and said, “You know, there’s a Mexican saying. A person dies three times. Once when their heart stops, once when they are buried, and once when the last person says their name. Rachel’s voice was so powerful, so important. She will be with us for a long long time.”

I cried more and gave Deena a hug, thanking her for her kind words.

I don’t understand why things work the way they do, but I am grateful for connections and comfort.

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Posted in Survivorship | 12 Comments »