A Different Kind of #MetsMonday

I love posting information each Monday on Facebook in honor of #MetsMonday. Today, however, I want to dedicate to all women living with breast cancer,  whether you were just diagnosed or are 10 years NED. Breast cancer never really goes away, mets or no mets. From what I’ve come to understand by many women, it’s something that always lingers.

If you’re going through treatment, it’s one decision after another. What treatment path should I take? Should I get both breasts removed or just the one? Should I get a second opinion? What if I make the wrong decision?

The questions keep coming with NED. As soon as you’re into year one of NED, you’re already asking yourself, Will I make it through to year two? Will my cancer come back? You read the statistics and each year, especially during the first two, you wonder. Others who are NED are too worried about the other problems that come along with having had cancer, like lymphedema, cording, insomnia and so much more.

Then there are the outwardly physical concerns — breast reconstruction, nipples, comfort. More decisions. Size, shape, nipples or no nipples, tattoos, no reconstruction. And whether women have had reconstruction or not, they still have to look down every day and see something that is foreign to them.

This is where I want to talk about my good friend, Stupid Dumb Breast Cancer founder Ann Marie Giannino-Otis. Ann Marie has been NED for 2.5 years and had reconstruction twice — after the first, her implant shifted into her armpits (holy mother of ouch) — cording on her left side and nerve damage and lymphedema on the right. She has felt the pain and sees the scars daily and has just been stripped mentally and physically by breast cancer. Her life is forever changed because of it.

But the beauty of Ann Marie is that she’s great at taking something shitty and transforming it into something beautiful. Instead of getting nipple implants or areola repigmentation, Ann Marie decided to go with straight up tattoos. “I wanted something to remind me of beauty and growth. Since healing is just that right?” she said in her blog post about her new ink. I think the pictures I am about to post are truly an inspiration to all women who aren’t sure which decision in their breast cancer journey is the right one. The answer? There is no right decision, but you have to do the best by you. Put yourself first, regardless of what other people think. Do whatever it takes to make you feel beautiful again. And that’s exactly what Ann Marie does every day of her life.

I dedicate this #MetsMonday not only to the men and women living with metastatic breast cancer, but to those simply living with the haunting after effects of cancer. Each and every day is yours. And you are beautiful.

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Photo by Genevieve Fridley

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Photo by Genevieve Fridley

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Photo by Genevieve Fridley

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Photo by Genevieve Fridley

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Photo by Genevieve Fridley

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Photo by Genevieve Fridley

 

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#MetsMonday

Today is #MetsMonday. But women with mets struggle with cancer every day.

In case you didn’t know, Metastatic Breast Cancer is when the cancer has been spread beyond the breasts — typically into the bone, liver, lungs or brain. An estimated 155,000 Americans are living with mets, the treatment of which will last for the rest of their lives. About 40,000 deaths each year are attributed to mets.

Pink Vomit

Peter’s had a little too much pink washing for his liking. Source: Google Images

 

So why do so few know about it? I think a handful of cancer organizations and the media focus too much on the pink, instead of stating the facts. I think my first blog post about Jennifer Campisano sums it up — the “TODAY Show” wouldn’t feature her during Breast Cancer Awareness Month because she wasn’t bald. I truly believe in the battle of education vs. showmanship, education takes home the gold.

Because of my education beliefs, here are some cold hard facts about mets.

-Metastasis in the bone may cause severe pain, swelling, and/or bones that are more easily fractured or broken.

-Metastasis to the brain may cause persistent headache or head pressure; vision problems, seizures, vomiting or nausea, and/or behavioral/personality changes.

-Metastasis to the liver may cause jaundice, itchy skin or rash, abnormally high enzyme in the liver, and/or abdominal pain, appetite loss, nausea and vomiting.

-Metastasis to the lungs may cause chronic cough, abnormal chest X-rays, chest pain and/or fatigue, weight loss or poor appetite.

20% to 30% of people initially diagnosed with early stage disease will develop metastatic breast cancer.

-Median survival after a metastatic breast cancer diagnosis is three years.

-Compared to white women, African-American women are diagnosed at a higher rate under age 40 and are more likely to die from breast cancer at every age

-Virtually all cancers, including cancers of the blood and the lymphatic system (leukemia, multiple myeloma, and lymphoma), can form metastatic tumors.

-The American Cancer Society states that the five-year survival rate after diagnosis for stage 4 breast cancer patients is 22 percent. This percentage is considerably lower at earlier stages. At stage 3, the five-year relative survival rate is 72 percent. At stage 2, it’s over 90 percent. 

-Metastatic research funding is approximately 5 percent in Europe and even less than that in the U.S. for research regarding all metastatic cancers.

If you’re living with Metastatic Breast Cancer, or know someone who is, this information can be very helpful. Also, here is a list of blogs of women living with mets. Not only is education vital, but so is companionship.

Darn Good Lemonade

Lisa Bonchek Adams

Telling Knots

Breast Cancer? But doctor…I hate pink!

gracefulwomanwarrior

ihatebreastcancer

Dancing with Cancer

Don’t Be Afraid of the Doctor — or Yourself

I had a friend recently who told me that she found a lump in her breast not too long ago. She explained that she knew she should call the doctor, but had been procrastinating because she was afraid that the news might be bad.

I told her to stop dragging her feet.

Sometimes, you just need to be up front with people. Breast cancer is not something you drag your feet with. I know so many women who are lucky they caught it when they did — women who, if they had waited any longer, probably would have died. Women who wouldn’t have even had the option of surgery.

I didn’t, however, believe my friend’s lump was cancerous, but stressed to her the importance of being proactive in her own health. She made an appointment as soon as I nagged her and was soon relieved to find out the lump was not, in fact, cancerous.

I have to admit, I do give her props for simply doing a self-breast exam. Most women our age — the 20-something workaholics that we are — find it especially hard to take care of ourselves in the present, yet alone be proactive for the future. We have demanding, low-paying jobs in our fields, a norm for the times. We can remember to grovel for a raise, but not do a self-breast exam. Which just goes to show what’s wrong with the American work model. But we won’t go there, today.

I, myself, found a lump in my breast this past July. No worries — it was benign. And I’m not sharing this in an attempt to claim I know what people with cancer go through. I only know secondhand. But I did watch ovarian cancer take my grandma from us, and although she was 86, I still felt like I didn’t have enough time with her. I know what the thin, putrid vomiting from chemo looks like. I know a lot of women lose their appetite because they can’t taste anything. My grandma would only ever eat vanilla milkshakes from McDonald’s. They were the only food item she could both taste and get enough calories from to keep her moving.

The point of all this rambling is that most of us will probably, at least once in our lives, find a lump somewhere. The point is to not come by it by accident but on purpose. Live life purposefully. Don’t pussyfoot around the hard stuff simply because it’s hard. Tackle it head on. Be your own warrior. Feel your boobies.

How to Do a Self-Breast Exam -- infographic from the Pharmaceutical Research & Manufacturers Association

How to Do a Self-Breast Exam — infographic from the Pharmaceutical Research & Manufacturers Association

Hello. Let’s talk about breast cancer.

Having always been observant, even from a young age, I realized early on that society likes to sugarcoat topics of the utmost importance. And by society I mean the media.

A major topic today, for example, is breast cancer. It was just this past October, when “The TODAY Show,” in honor of Breast Cancer Awareness Month, asked women who had undergone treatment to come to Rockefeller Plaza in New York to be featured on the show. Breast cancer warrior Jennifer Campisano was excited at this prospect. That is, until she received this email from “The TODAY Show”:

“Thank you so much for your response. We are specifically looking for women who can be bold and bald on the plaza for an empowering movement to support breast cancer.”

Excuse me?

Although Jennifer didn’t fit the ridiculous requirement — and awful stereotype — to be bald to be featured on “The TODAY Show,” she is, today, still suffering from metastatic breast cancer, which means the cancer has spread beyond the breasts and into other organs in the body, particularly the bones, lungs, liver and brains. This type of cancer is considered Stage IV Breast Cancer and cannot be cured. An estimated 155,000 Americans are currently living with metastatic breast cancer, and metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.

Metastatic Breast Cancer Infographic; source: businesswire.com

Metastatic Breast Cancer Infographic; source: businesswire.com

Metastatic breast cancer is NO JOKE, and the most severe form of breast cancer, considering treatment is lifelong.

Here’s Jennifer’s response to “The TODAY Show’s” email, which was published on The Huffington Post:

My heart sank. I’d been bald twice. That wasn’t enough? Had I not been through enough shit to merit the ‘bold’ stamp of approval from TODAY? I wasn’t welcome because I wasn’t BALD? What. The. Everloving. F*ck. I was saddened and livid and frustrated and then humiliated that I’d gotten my hopes up. I checked the message boards for the online support groups I belong to, and I wasn’t the only one.

You see, many, many people with metastatic breast cancer do not lose their hair. For many patients, especially if their tumors are fueled by hormones (which is the majority of breast cancer patients), broad spectrum chemo is a last resort used only after bone-strengthening treatments, anti-hormonal agents, and other targeted treatments stop working. None of those other treatments cause hair loss. Neither do newer, targeted chemotherapies like the one I’m on. A lot of us with Stage 4 have our hair.

That doesn’t mean we won’t die from this disease unless researchers come up with something better soon. We face our mortality every day, live with side effects that range from mildly annoying to debilitating, and an estimated 40,000 people will die of MBC in the U.S. this year, and yet, metastatic breast cancer gets less than FIVE PERCENT of breast cancer research dollars.

I tried to look at it from a producer’s point of view. A sea of bald heads would surely make a far greater impact on television than a group of people wearing pink. And of course, this seemed to be more about ratings than actual support or empowerment or — God forbid — education. That didn’t make me less upset about it.

And this is where Jennifer and I find ourselves on the same page: We must sift through the bullshit to find the facts, and strive to actually help — and educate — people rather than increase our ratings for the sake of appearance. There are always going to be those who love you and those who hate you in this world, but only a handful of people make a difference. Even if only one person reads my blog I will have at least achieved my goal to share knowledge about the truths of this messy world we live in, and maybe even change a life for the better through education, enlightenment and honesty.

Here’s to a year of being up in your grill, stealing your candy and shedding the light.

Alyssa LaFaro