Stage IV Breast Cancer

Forget Pink Ribbons—This is How You Mark Breast Cancer Awareness Month

/ Jennifer / Leave a comment
Pinktober is here again.

Breast Cancer Awareness Month, or Pinktober, is here again. Amid the skeletons and jack-o-lanterns, pink ribbons and cutesy slogans are here to remind you that a disease that kills roughly 40,000 per year exists. You know, in case you were unaware.

While it’s cool people and companies are also taking this time to raise funds alongside that oh-so-important awareness, I think there’s more we can do.

For instance, we’re all aware this disease exists. But did you know it presents in a number of ways that don’t include lumps? Ways that sometimes don’t show up on mammograms? Scary but true. I recently wrote a piece for Healthline on this very thing. Did you know skin dimpling can indicate breast cancer? You can learn more about the signs in my piece, as well as at Know Your Lemons (a fab resource).

Here’s another thing you probably didn’t know: Metastatic breast cancer is the only kind of breast cancer that kills. Meaning, once cancer metasticizes (spreads), it can and often will kill. Here’s the even scarier part: Even early stage cancers that are successfully treated can metasticize. There goes the assurance that catching it early automatically means you’ll be fine.

This is the fear every breast cancer patient and survivor lives with. Will it come back? Will it spread? Will I die?

Which brings me to my second point in how to truly make the most of Pinktober: Donate to Metavivor. Stage IV or metastatic breast cancer is the least-funded type of breast cancer research, even though it’s the only type that kills. Metavivor is the only organization dedicated to metastatic breast cancer research, as well as supporting MBC patients. And all donated funds go to that mission—you never have to worry about shady dealings filtering your support. I donate to Metavivor every year, and I encourage you to, as well. Every penny counts.

Last but not least, be gentle with the breast cancer survivors in your life this month. Pinktober is incredibly triggering for us, and throwing a pandemic on top of it doesn’t help. Just remember the fear of illness you’ve lived with these past few months has been our reality for a while, and while a vaccine will one day stop COVID, there’s no silver bullet to kill our boogeyman.

A Bright Light

/ Jennifer / 3 Comments

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Today’s the day. The amazing book by poet Nina Riggs, “The Bright Hour,” is now available.

I wrote about Nina last year in this blog after reading her remarkable Modern Love essay in The New York Times about living with metastatic breast cancer. That essay led to a book deal, which gives us this gorgeous, gorgeous memoir.

I got the absolute honor of writing a piece on Nina’s book for The News & Record, the newspaper in the city where we both lived. It was probably one of the hardest–and most important–things I’ve ever written in my career as a journalist. Though I’m a writer by trade, I find it so hard to put into words the feelings I have about Nina, her story and this book. She has touched me in ways that I really almost can’t describe, at a time when I was most vulnerable and afraid.

Nina not only captures exactly what it’s like to receive a cancer diagnosis and go through treatment, but she also shines a light on the oft forgotten/overlooked metastatic/stage IV cancer community. Stories like hers are so important, and are so rarely told. Even rarer, told with such beauty, humor and courage.

I cannot recommend this book strongly enough. It will move you, and it will change you. You do not walk away from Nina’s story unaffected. And you’re better for having heard it.

Survivor’s Guilt

/ Jennifer / 4 Comments

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This morning I had my survivorship appointment at the cancer center. This is a next step in my cancer journey–addressing what I need physically and mentally after treatment.

One of the things that I’ve come to realize is most overlooked/not talked about when it comes to cancer is what happens to a person after they complete treatment. When you’re in the throes of the battle, as strange as it sounds, things are almost easier in a way. You have a focus, you have a plan, and you’re really sort of forced to take things one day at a time–handling that day’s treatment, side effects, etc. There’s a routine of appointments, blood draws, check in, check out.

But then everything sort of stops. Appointments taper from weekly to monthly to every couple of months. Your arm stops feeling like a pin cushion (that I don’t mind so much). Your hair grows back (that I definitely don’t mind). Suddenly the routine changes, and you’re supposed to go back to your normal schedule.

Except, nothing feels normal anymore. Even as I go to work, take care of my son, carry on with my regular activities, things are no longer the same. There’s a new sense of fear, anxiety and even guilt.

I’m feeling the latter more acutely this week. On Sunday, Nina Riggs died of metastatic breast cancer. She was only 39. I’ve been following Nina’s story since last fall when her incredible essay about living with terminal cancer ran in The New York Times‘ Modern Love column. Nina’s story resonated with me in so many ways–as a breast cancer patient, as a mother of a young boy, as a wife, as a woman who lost her mother too soon. We had a lot of things in common–we even lived in the same city and had some mutual friends of friends. I wrote about Nina’s essay in this blog, and she was even kind enough to comment and send good wishes my way.

I’ve cried so much this past week for Nina and her family, her two boys in particular. Though I didn’t really know her, I got to know her through her writing and I could empathize with many of the things she experienced during her fight with cancer. I know how hard it was for her as a mom to know she’d have to leave those boys. My heart aches for her in that regard, and for them as  children who lost their mother too soon.

Even more bittersweet is the fact that Nina has a memoir called The Bright Hour coming out in June, chronicling her experience living with metastatic breast cancer. She wasn’t able to live to see its official release. But I hope it will allow more people to not only get to know her great talent, but also shine a light on a type of cancer that is generally kept in the shadows. Nobody wants to talk about metastatic breast cancer because it’s usually not a happy story to tell. But the fact is there are thousands of women and men who face and live with this diagnosis every year. And their stories are important, and I’m glad at least one of them is going to be told in such a public way.

As I wrapped up my appointment this morning, the NP I met with gave me a hug and congratulated me on reaching this point. I know I should be feeling celebratory–and I do in a way–but it’s hard to totally let my guard down and enjoy this moment. It’s a process, and I have a lot of work to go, and I plan on seeking some help to get there. In the meantime, I’m just focusing on feeling grateful. I know how fortunate I am to be where I am, and that’s enough to get me through today.

 

Have a Heart

/ Jennifer / 4 Comments

 

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It’s that time again. Well-meaning people are sending messages on Facebook urging their friends to post hearts or their bra color or whatever else in honor of “breast cancer awareness.”

Here’s one I’ve already had sent to me twice this week:

Hello, can you put a ❤ on your wall, without comment, only a heart, then send this message to your female contacts. After putting one ❤ on the wall of the person who sent you this message. If anyone asks why you have so many hearts on your wall do not answer. It is for women only to remember its the week of breast cancer prevention! ❤ Check your boobies!! Hold your finger down on the message and hit forward.

Oh, there is so much wrong here. For starters, there is no such thing as “the week of breast cancer prevention.” If there was a such week, trust, my ass would’ve been doing whatever possible to “prevent” the hell I’ve been through these past six months.

Second, how on earth is posting a heart on my wall doing anything productive? It even says you’re not supposed to explain it when people ask, so you’re not raising awareness. You’re basically vaguebooking for no good reason.

Third, men get breast cancer, too. Like metastatic breast cancer, male breast cancer is pretty much ignored. And it happens to many men and deserves just as much attention and support as occurrences in women. So, yeah, until this cancer is “for women only,” awareness shouldn’t be.

Fourth–and this is just a personal one for me–reminding me to “check your boobies” really isn’t necessary at this point, considering I’m a month-and-a-half out from a bilateral mastectomy.

If you really want to help raise awareness and/or support those fighting/survivors of breast cancer, there are far more productive things you can do on social media:

  • Remind your friends to do monthly self-exams, perhaps posting a link to a how-to, such as this one from Breastcancer.org.
  • Share information about metastatic (or Stage IV) breast cancer, which is widely ignored by the media and public at large because, frankly, it’s really sad and scary and usually doesn’t end with a rah-rah survivor story. It’s also one of the least-researched forms of cancer. But the fact is, this is the reality of many women, and even those of us with lesser diagnoses will always face the specter of this beast. Here’s a site with some general info.
  • If you can, give. But when you do, be careful about where you give. Some of the most popular breast cancer charities–*cough*Komen*cough*–have issues with where funds go, and how they pretty much ignore the Stage IV community (who need the support and funds the most). Some solid groups doing real good for women fighting this awful disease include METAvivor (which supports Stage IV research and patients), the American Cancer Society (which supports research for all cancers) and the Young Survival Coalition. Also, look into giving to your local cancer center to help women in your own community.

I know people mean well and come from a good place, but rather than being so quick to click and share, stop to think about what you’re sharing, and whether or not it’s actually accomplishing anything. Social media is a powerful tool for raising awareness about issues, and if we all used it thoughtfully, there’s no telling the good we could do.