The Joys of Study Participation

Sure, I had to endure a trans-vaginal ultrasound and a blood draw by a nervous researcher, but getting $40 for an hour-long research study visit is pretty friggin’ sweet. I should demand that all my doctors compensate me $40/hr for my time.

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Worth it. 

 

3 Year Mastectoversary

April 5th marked three years since my initial surgery. You can read the first post about my double mastectomy here, if you feel so inclined.  I didn’t even realize it was an anniversary until the day after; it just goes to show how much distance time can provide. At my oncology follow-up this week (I see her every 6 months now), my doctor talked about recurrence for Triple-Negative Breast Cancer, and cited some information about the highest likelihood of recurrence being in the first 2-3 years from diagnosis (more here). I guess it feels good to know I’ve reached that point, but I have a hard time breathing easy just because of some studies. I still feel like my risk of recurrence is high and I’m not sure that will ever go away.

I felt, on this date, that it was appropriate to share a recent NPR article about NOT having a double mastectomy: Why My Wife Didn’t Choose a Double Mastectomy. Of course, the woman in this article does not carry a BRCA mutation, so her situation is different, but I did want to highlight that mastectomy is not always the best choice, even for people WITH a mutation. When I first learned of my mutation at age 22, I opted not to have surgery and I didn’t plan to even start thinking about surgery until I was at least 30. Looking back, even though I had cancer, I wouldn’t have changed that decision. I think a lot of women get vilified for choosing not to have surgery, and I think it’s important to hear that they are not alone. The choice is so personal and people should be supportive no matter what. 

New Study Suggests Removing Ovaries For Some Women

caraelyse:

Welp… guess I have to start saying goodbye to my ovaries.

Originally posted on Health & Family:

Women who inherit a genetic mutation linked to breast and ovarian cancer could reduce their cancer risk significantly by having their ovaries removed by age 35, according to a new study.

Researchers studied over 5,000 women with the BRCA1 and BRCA2 genes—which are known to increase the risk for certain cancers—from seven countries between 1995 and 2011, NBC News reports. About 3,390 women had their ovaries removed either before or during the study, and women with some BRCA1 mutations reduced their risk of cancer by 80%, according to the study published Monday in the Journal of Clinical Oncology. About 2,270 women in the study did not have their ovaries removed.

The study also shows that women who wait until after 35 to have the surgery increase their risk of developing ovarian cancer fivefold and were four-times more likely to die prematurely.

“To me, waiting to have an oophorectomy until after 35…

View original 51 more words

A Doctor’s Musings on His Terminal Illness

Just want to share this NYTimes article, How Long Have I Got Left?, because it is so beautifully written and insightful. My favorite quote is:

“I began to realize that coming face to face with my own mortality, in a sense, had changed both nothing and everything. Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live.”

Lisa Bonchek Adams and Cancer Wars

A couple weeks ago there was a notable controversy in the world of cancer and social media. A husband and wife, both journalists, wrote two separate articles in popular media that questioned the choice of stage IV breast cancer patient Lisa Bonchek Adams’ decision to tweet through her experience. The articles, published in the Guardian and the New York Times, respectively, weren’t overtly nasty but they did call Adams’ tweets things like “the equivalent of deathbed selfies” and say that it may be more heroic to die quietly than to fight cancer to the death.

The Guardian article, by Emma Keller, has been removed, but here is an editor’s note about it. The husband, Bill Keller’s, article is here.

And a wonderful Time Magazine piece about the whole thing can be found here. I wholly agree with one of this article’s points – that if you don’t want to read Adams’ tweets, you don’t have to.

I don’t have anything wildly intelligent or insightful to add to this conversation, but it’s worth sharing. I find there to be so much cancer-shaming in this world – people telling others that they are somehow doing things wrong or making others feel bad or whatever. Heck, I did it myself in the post about the video of the woman who danced before her mastectomy. I think it’s natural for humans to do this, and though I’m not thrilled about it happening in ultra-public forums such as New York Times, I do realize that this is the age of the Internet when everyone has a wide-open land in which to share their views.

Ultimately, everyone’s entitled to their own opinion. Remember my new motto – “feelings are never wrong.” But sometimes, especially if those feelings might hurt others, it’s best to keep them to yourself. And even BETTER than that, is to dig deep within yourself and try to accept that everyone is different and everyone deals differently, and not judge others too harshly if they choose a path that is not the same as yours.

Can’t we all just get along?!? In conclusion, here’s a T-rex covered in snow.

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Another Year: Reflecting on 2013 and moving forward to 2014

Just like that another year has passed. My cancer experience was confined to 2011, and since then I kind of defined my time based on that – 2013 was 2 AC (after cancer). 2012 was a rebuilding year; I literally rebuilt my body and figuratively rebuilt a “normal” life after cancer. When 2013 started, I saw it as a year of bursting forward in spectacular new ways. I quit a job that I was starting to resent, I traveled on my own to a foreign country for a month, I applied and got into graduate school and I moved from DC back to Philadelphia, where I grew up, to attend said grad school. This past year, in a lot of ways, brought me closer to the path to happiness and fulfillment that I so desperately seek and that feels so much more urgent now that I’ve had cancer. 

Sometime in 2013 however, probably in the summer, I stopped thinking of time in terms of cancer. My hair was long enough to put into a ponytail, and I was making new friends who, absent of any context clues, had no idea that just a year and a half ago I sat in a cushy chair while adriamycin and other such pernicious drugs coursed through my veins. Now I struggle with whether or not to tell my grad school friends, and my bf and I say things to each other like, “Hey, remember when I had cancer? That was crazy.” 

In 2013 I was easily moved to tears many times. Fortunately, I think it is not because I watched many romantic comedies but instead because I let beautiful moments into myself so deeply. I was moved to tears by great pieces of music, well-written books, and natural wonders like a night sky full of stars or sunset over the Teton mountains. Considering I made a resolution in 2012 to stop and fully experience small moments, 2013 was a smashing success. 

But there is still a lot that I have to work on, so here are my “resolutions”, of sorts: 

  • One: I have to settle on a whether or not and how to tell new friends that I had cancer. It was a whole year of my life and left me with stories to tell, but it is often strange to start a sentence with “I had cancer and…” while at a bar surrounded by beer bottles or at a friend’s house enjoying a home-cooked meal. 
  • Two: I have to continue learning not to beat myself up over feelings like jealousy. As was written in the book I just read, A Map of the World, “…feelings are never wrong. Emotions in varying degrees exist, of course, and have to be acknowledged, but they in and of themselves… do not have moral weight and should never be judged.”
  • Three: I have to stop being timid when it comes to going for the things I want in life. I always seem to apply to jobs that are below my skill level because they are easier targets. I take unpaid internships because it’s easier than trying to find paying part-time work. For many years, I’ve said that I can’t make a living from singing because auditions are too hard. All of that needs to stop. I know it can’t all happen at once, but I want to acknowledge that I have this problem and work on it.

And that’s about it. Not sure how any of this relates to cancer, except that cancer lit a fire under my ass to get my life in order and realize what’s really important. 

Anyone else have resolutions they want to share? 

Video

Dancing into a Double Mastectomy

I know I should feel joy watching this video. So many others found it inspiring and great to watch. For some reason, though, I feel kind of bitter. I was in NO mood for dancing before my double mastectomy, though yes I do remember times during my treatment and surgeries when I made jokes or did things to lighten the mood and be positive in the face of overwhelming negativity.

I wonder how other survivors feel. I’m probably just bitter because I don’t have thousands of YouTube views. Or maybe it’s because things like this perpetuate the view that breast cancer and cancer surgeries in general aren’t all that serious. (More likely, though, it’s the YouTube views thing).