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Saturday, March 28, 2015

Whose Cancer Is It Anyway?

What do you call the person who holds your hand during a cancer diagnosis? 
What do you call the fiancé who picks up your medication, the friend who makes your favorite meal, the sister who changes the dressings on your surgical incisions?
Traditionally, these people are called caregivers. An odd blend of nurse, parent, therapist, cook, workhorse, and peer, caregivers play an integral role in a patient’s recovery from cancer. A caregiver can improve medication adherence, nutrition, quality of life, and more.
As part of the upcoming Ken Burns series Cancer: The Emperor of All Maladies (trailer below), PBS has released a number of short videos on One video features actor Ken Jeong (of The Hangover fame) speaking about his experience caring for his wife, Tran, during her treatment for breast cancer.
Read the rest here.

Thursday, March 26, 2015

The Ride to Conquer Cancer: 150 mile bike ride for the Cancer Research Institute

You already know that I'm NOT doing any 150 mile bike ride, so don't worry. :) 

But I am working crew for The Ride to Conquer Cancer this June, and raising funds for the fantastic Cancer Research Institute, the organization that I'm proud to now be a part of.

CRI funds research for cancer immunotherapy. 

"But what the hell is that?" you may find yourself saying. Well, I'll tell ya.

Immunotherapy falls under the umbrella of precision medicine. Unlike blunt treatment likes chemo and radiation, which kill everything in their wake, immunotherapy uses the body's immune system to target specific parts of cancer cells to shut them down and kill them. 

Please enjoy this video of T cells killing cancer cells:

To me, the various types of immunotherapies (and there are many!) are the best shot we have at curing many types of cancer. Matt and I both received a monoclonal antibodies (a type of immunotherapy) as part of our cancer treatments. I'm currently enrolled in a trial for a vaccine to prevent my cancer from recurring. The monoclonal antibody I received, Herceptin, is solely responsible for a 37% increased survival rate in patients with my type of breast cancer. In cancerland, that's huge.

Immunotherapy is the next big thing, but CRI needs help funding more scientists. It's a great organization -- 88 cents of every dollar goes to programs, and we receive an A rating from Charity Watch Dog.

If you can't donate right now, please consider sharing the following link on your social networks:

Friday, March 13, 2015


I'm back in Jersey City after a weekend in Houston. The city itself didn't make the best impression. It was unseasonably cold; there was a Big Oil convention in the hotel; people drank soda for breakfast.

But the YSC Summit had a lot of really great programming. I got to meet Dr. Susan Love (I'm a fangirl) and attended some excellent breakout sessions. The sessions were recorded, so I'll be posting the links when they're ready. Dr. Love and Dr. Don Dizon were the highlights of the conference for me.

The summit as a whole was an interesting experience. Generally, there are so few of us young BC peeps in a room together that we just talk and get along really well, because there's no one else who knows what the fuck is going on with us.

But at the Summit, there were 600 young women, at all phases in treatment, in all stages of the disease. I was smiling at everyone -- we're the same! -- but also, we weren't, I guess.

It was overwhelming, and all the ease I normally feel with other cancerados was missing. My shyness prevailed. The first night of the conference, I ate dinner alone at the bar. And the first night of the conference, I learned that Lisa Adams had died.

If you're not plugged in to the breast cancer social media community, you might not know who she was: a metastatic breast cancer patient and beautiful writer, with a wise and prominent blog about her aims to live as well as she could, as long as she could, given her diagnosis. She was bizarrely trolled last year by Emma and Bill Keller for sharing the details of her experience. (I don't know if "healthy person privilege" is a thing, but this screams of it. Anyway. Lisa was so, so much more than those idiots.)

When I read that she had died, I cried. I reread old posts, thought of corgis and clematis, and her kids, and how I didn't know her but I feel as if I do. I scrolled and scrolled. Expressions of grief poured out across social media.

And though I was very sad, I felt I was in the right setting to hear the news. A breast cancer for conference for young women seemed the right place to mourn the loss of one of our own.

The next morning I printed out one of her daily tweets ("Find a bit of beauty today. Share it.") and pinned it to the Remembrance Board located outside the main ballroom. The board was crowded with too many notes and pictures. Way too many.

I don't know what I expected to happen as I hustled into the crowded ballroom for the morning session. I figured she would be recognized, and that we could talk about it as a group somehow. But, aside from one doctor (Dizon) who dedicated his presentation to her, I didn't hear a peep.

And then I really got it. I mean, I knew stage IV women were not part of the pink survivor conversation that Komen, et al, push. I knew that no one keeps track of how many women become metastatic. I knew that only 3% of research dollars are put toward researching metastatic disease. I knew these women were marginalized. But I guess I expected more of YSC. The lack of acknowledgement of Lisa's death, and thus any death, in an official capacity was jarring and disappointing.

Where were the conversations about grief, loss, trauma? About knowing just exactly what way you will die? About what it does to a person to get cancer when you're a fucking kid, and lose so many friends you can't even fit all their faces on a bulletin board?

There were sessions for metastatic women, and one was about legacy. I wasn't able to attend because I was participating in state leader training. But I don't know that I would have gone. Would it have felt like intruding, because that's not my story right now?

There wasn't official space for early stage women to talk to and learn from metastatic women. Though, through sheer luck, my companions and I arrived to dinner very late and found the lone occupied table in a cavernous room, where Lori Marx-Rubiner of METAvivor was sitting with another Lori, and a new friend, Jess from New Zealand.  We sat, and ate, and spoke for a delicious amount of time. And you know what? Metastatic disease is less panic-inducing when you meet someone living with it. The thing we run from is doubly fearsome because our backs are turned. I wish all of the women at the conference could have learned that.

Because Lori pointed out, rightly, that fear is the reason these women are essentially ghettoized. They are living examples of all of our greatest fears around cancer. Our greatest fears, period. I hate that that happens in our community, but it does. It's not a problem specific to YSC; I don't want to seem like I'm throwing them under the bus. It's a problem throughout the entire breast cancer community.

My friend Felicity, who photographed me after one of my surgeries last summer, was at the conference and asked me if I felt I had made any important connections. "I don't really connect this way," I told her, thinking of the enormous ballroom full of people I didn't know.

But now I think again of the ballroom, empty after the evening concluded, save for our one table of pilfered snacks and a strong dose of reality, and I realize I made some very important connections, both with others and with myself.

40,000 American women die of breast cancer every year. All 40,000 of them die of metastatic disease. And you won't see one of them in a Revlon ad. 

Visit METAvivor today to learn how can get involved with their programs. 

Friday, March 6, 2015

YSC Summit

I'm here in Houston for Young Survival Coalition's annual conference! It's going to be three days of programming dedicated to breast cancer patients under 40.

Today I have State Leader training before the whole event kicks off. Here are some of the things I'm excited about this weekened:

SUSAN LOVE. I'm a fangirl.
- Tamales! There's a famous place near where I'm staying
- Being in a room with 500 plus people who share this crazy experience
- Awesome programming -- I'm looking forward to panels on genetic risk/family history of BC, relationships post-BC and more
- There's a funeral museum near the airport. Pit stop on the way back to Jerz.

...and I'm embarrassed to admit I'm also psyched to check out the custom nipple prosthetics booth.

Things I'm less excited about
- Soda in the breakfast buffet (wtf texas?)

Check back throughout the weekend for updates!

Tuesday, March 3, 2015

The Circle Game

Soo, turning 31 tomorrow. 

The other night, Matt asked me, "Did you think you'd have kids by now?"

I did.

If you'd asked me in 2013 if I thought I'd be done with reconstruction by now, I would have said yes. Last April I made a plan to devote the month to feeling better about my body, with the idea that at the end of 30 days I'd have some magical perspective shift.

Truthfully, I love a deadline. It lights the fire to accomplish things. Toward the end of grad school, I figured out how to exploit this tendency of mine -- a simple, reward based system for meeting short deadlines. Write ten pages by six pm? Get a massage. Hand in a paper a week early? Buy full priced thing from Anthropologie.

But deadlines only work when you're in control of what's happening. And, shocker, once you're out of school that's basically never.

I think I've been fooled or unknowingly influenced by the spate of stunt memoirs that were popular a few years ago. The writer puts him or herself in a situation ranging from the absurd (like The Year of Living Biblically) to the disciplined (Julie & Julia) to the hedonistic (Eat, Pray, Love). I've read and enjoyed many books like this. But they create a false timeline.

A life doesn't happen in a neat story's arc. It's something I've written about before. If you are masterful, you can chip a perfect and heartbreaking story out of many years (my number one example right now is Dog Years but there any many more). But setting out to do something for one year and have enough events for a plot and enough emotional growth for a story is probably actually impossible, and I wonder how many authors wind up fudging on the hugging and the learning. (Unlike Seinfeld, I am pro embrace, pro epiphany.) It may seem harmless, but it sets up some messed up expectations for life.

Setting emotional deadlines for yourself or other people is...not a good idea. Because emotional time is not linear. Getting farther in months or years from an inciting incident does not result in a neat diminishment of influence. The worst moments in my life are either so long ago I can barely feel them, or so present that their proximity drenches me in sweat. And back and forth, around and around.

And acceptance isn't stationary. And love isn't an ever fix'd mark. And moving on means more movement than most people know. Back and forth like waves, round and round like the Earth, in and out like breath. Parts of us are always moving.