30 facts in 30 days - DAY 30, WE MADE IT!

Thank you for sticking with me this Pinktober as I've worked to empower and educate. I hope you've learned something - I know I have! I hope you'll think twice before buying anything festooned with pink ribbons, and that you'll know what questions to ask. I'm ready to close the many tabs I've got open on all my devices and take a break from reading about cancer. I'll be doing a blog post with all the links from this month, but not today, and probably not tomorrow, either. I'm leaving you with Melanie Childers of Badass Survivors - learn more about Tamoxifen, the drug most of us who are pre-menopausal are prescribed after treatment.

Badass Survivors: Episode 6, Tamoxifen and Depression with Melissa McAllister of Brave Girl Boxes

30 facts in 30 days, day 29

Early detection DOES NOT equal a cure, and anyone, no matter their original staging, can go on to develop mets.

In a culture focused on survivorship, those with metastatic breast cancer who will be in treatment for the rest of their lives can feel isolated and misunderstood.

Living with stage 4: the breast cancer no one understands

30 facts in 30 days, Day 28

Breast Cancer Action offers tangible ways everyone can help, including Think Before you Pink, and Don't Pink for Me.

30 facts in 30 days, Day 27

This woman has had breast cancer for 17 years. Here's what she wishes everyone knew.

30 days of facts, Day 26

The conversation MUST change.

"Currently, it is estimated that Stage 4 breast cancer receives less than 5% of the funding earmarked for research. In the U.S. alone, 40,000 people will die of metastatic breast cancer this year, and that number hasn’t changed much in the past 30 years."

When The TODAY Show Told This Metastatic Breast Cancer Warrior She Wasn’t Bald Enough

30 days of facts, day 25

Breast cancer is expensive. My care, which did not include chemo or radiation, has gone over $250,000; with very good insurance, we paid out over $12,000 out of pocket with travel expenses.

Breast Cancer's Financial Toll: The High Cost of Fighting for Your Life

30 facts in 30 days, Day 24

Radiation may seem like "a walk in the park" vs. chemotherapy, especially to those who haven't had it. In my own case, I could have chosen lumpectomy and radiation over the double mastectomy without radiation, but because I had a tumor in each breast, my risk of long-term health issues was much higher.

I was criticized for choosing such a drastic surgery for stage 0 (DCIS) cancer. However, as I already have an autoinflammatory disease and seem to be the "side effects queen," my doctors warned me that due to the location of my tumors, I would end up on permanent asthma meds (my asthma currently only flares if I get sick), and there was concern because I have a heart murmur. 

10 Effects of Breast Cancer Radiation on the Body

30 facts in 30 days, Day 23:

Breast cancer is considered the "sexy" cancer because BOOBS. Yet many of us get mastectomies to save our lives, so everywhere we go, we're basically told that we're less as women because we no longer have "ta-tas".

As Barbara Ehrenreich has said, the breast cancer movement that empowered women a decade ago has been replaced by a "pink ribbon culture." No organization would dare make heart disease or lung cancer into a sexy disease. Cancerous breasts threaten idealized femininity and the eroticization of the female body, and these "awareness" campaigns are no different from the over-sexualized and fetishized imagery in mainstream culture, which reduces a woman's value to her body parts.

Save the Ta-Tas, Save Women?

30 facts in 30 days, Day 22

Many of us feel trapped in the "tyranny of cheerfulness" that surrounds so-called survivors. I do not want to be known for or celebrated because I had cancer! I had a disease that people routinely die from, and I haven't. It's the luck of the draw that I didn't, really, and the side effects I live with daily are not celebration-worthy. 

Barbara Ehrenreich sums it up perfectly: Smile, you've got cancer!

30 days of facts, Day 21

Having breast cancer means being ‘aware’ every day, not just in October

WE ARE AWARE. Every day, every minute, we are aware we've had cancer. Whether it's looking in the mirror and seeing our scars, being in pain from ongoing treatment or lymphedema, or any number of other ways our bodies are kind enough to remind us, we never forget.

Saturday was my 3-year "cancerversary" and I took the day off from being immersed in the conversation, or so I thought. I didn't post a fact, I didn't think about a blog post, I didn't do any research. Our teenage son was on a band trip, so my husband and I spent the day together. Among other things, we drove to a larger town than ours to go to the mall because he needed dress shoes. As we walked around the mall, I realized that I couldn't "take the day off" because the pink reminders were everywhere. In one store signs let us know that they would ask us to round up our purchase for breast cancer awareness and I whispered to him "please, say no" (he would have anyway). As we walked, I held my breath to keep the tears in. At one point I burst out to him "I can't escape!" because the pink was ubiquitous. 

At the (thankfully) last store, I was sitting while he tried on shoes. The lady who was helping us - I'd guess she was in her early 60s - asked what I'd done to my wrist when she saw the compression glove. I said "I had breast cancer. This is a side effect." She looked like I'd slapped her, as she took a step back, staring wide-eyed. "I had lymph nodes removed, and now I have lymphedema. My arm and hand swell if I don't wear these." I peeled back the glove cuff to show her the top of the not-as-visible sleeve. "I've never heard of that," she said, followed by "but you're ok now?" and I raised my hand and said "you know, mostly, aside from this." And she said, with hope in her voice, "but that will go away!" and I shook my head and told her no, unless a cure is found, it's permanent. She couldn't accept it. As we paid and left, she leaned over to me and stage-whispered "you get better FAST!"

I asked my husband if I should lie when people ask me. If it's overwhelming to strangers to hear I had cancer. I was diagnosed at 44 and am now 47, but am fortunate to look much younger than the years I feel every day and I guess they don't expect an answer like that from someone young. He said no, and that people ask more often now because the glove is so visible. I wear a plain beige sleeve, and before I needed the glove it was rare anyone noticed it. (Sleeves are available in all kinds of designs, including those that look like tattoos. People think that since I like to dye my hair crazy colors, I would wear a sleeve like those, but I would rather be known for my hair than my cancer!) He said I answer people factually without word-barfing on them, and that it's good, though he knows it's hard. 

I've had health issues most of my adult life, but have always been private about them. If I was having a bad day, I stayed home so nobody would see. Now, though, it's always visible. I don't get to make that choice. Sometimes it's good - I can be an educator. But other times, I want to forget, just for a little while. And as the author of the above-linked article says, I never can. Not in October, and not the other 11 months of the year. Pinktober is such a disservice to those of us who cancer has touched in any way, and it doesn't do anything to actually help anyone. 

30 days of facts, Day 20

Some of us don't want to be called "survivors".

I wasn't public about my diagnosis or surgery for quite awhile. I didn't post on Facebook until a few people 

who knew made comments that led others to start messaging and asking if I was okay. When I finally did come out and start talking about it, people would say that I was braver than them, that there was "no way" they could have done what I did. I've never understood that - what would they have done, just let the cancer take over until it killed them? The only part of "what I did" that maybe others couldn't or wouldn't is to go into surgery in a tiara. The rest is not special or heroic. I am not a survivor to be celebrated, I don't consider cancer a "gift" in any sense of the word, and I dislike the whole "battle" mentality.

...saying someone who is now cancer-free is a “survivor” conveys that he or she is somehow better than the people who didn't make it...

from Jack Layton didn't lose a fight, he died of cancer

Think about it. If anybody ever told you that you'd voluntarily be poked, prodded, knifed, drugged or radiated, would you think you could? Nearly 12 million of us have, but just because I'm one of them does not make me a fighter or a hero. I didn't fight for my life any harder than anybody else. And I didn't volunteer to have cancer for somebody else, which might have been heroic. I simply got sick, took a lot of horrible drugs for several months, laid around most of the time I was taking them, watched my friends and family worry, and then got well. That's not heroic. It's what life handed us. And sometimes life is messy. 

Candid Cancer: Why the label of 'survivor' rubs me the wrong way

30 days of facts, Day 19

I didn't have chemo, but I've talked to a lot of people who have, and the research backs them up when they talk about "chemo brain."

Chemo Brain, from The American Cancer Society

30 days of facts, Day 18

Today is my "cancerversary" - 3 years ago today I heard the words that would turn my world inside-out. I'm giving myself today to take a breather, and not spend time immersed in the world of breast cancer as I have been this month. Please feel free to post links, facts, research, etc. in the comments to take up the slack!

30 days of facts, Day 17

Unlike most other cancers, breast cancer is not just one type. It's extremely complex, and many factors go into treatment, projected outcome, and recurrence risk. Is the cancer invasive or non-invasive (still contained)? In what part of the breast did it begin (ducts, lobules, connective tissue)? How does it appear under a microscope (there are many subtypes of each of the above)? Is it hormone-receptive (estrogen, progesterone)? What's its genetic makeup (using that information, the cancers can be grouped, and treatment better targeted)? Understanding this complexity can help explain one reason there is still no cure.

Mayo Clinic: breast cancer types - what your type means

30 facts in 30 days, Day 16

Breast cancer patients often suffer from PTSD (Post Traumatic Stress Disorder). I know I do! When I go for my checkups at the Kirklin Clinic in Birmingham, I am anxious for at least a week prior, and the second my foot hits the catwalk from the parking garage, I usually go into full-on panic mode.

Nearly 1 in 4 women with breast cancer report PTSD symptoms, study finds

30 days of facts, Day 15

Today I'm giving you all a gift: an incredible podcast from a good friend of mine. Please listen as Melanie Childers of Badass Survivors interviews Lori Marx-Rubiner, current president of Metavivor. Lori talks about metastatic breast cancer - the only one that kills, yet the one with the least amount of research funding.

EPISODE 4 – METASTATIC DISEASE WITH LORI MARX-RUBINER

30 days of facts, Day 14

Median survival: 3 years. Read these stats please. Note the high % who incorrectly believe that we have metastatic breast cancer because we didn't "catch it early" or "didn't choose the right treatment." It is Metastatic Breast Cancer Awareness Day today. Every day is MBCA Day to me.

Lisa Bonchek Adams

30 days of facts, Day 13

Today is Metastatic Breast Cancer Awareness Day. ONE DAY in a month of pink to raise awareness of the ONLY kind that kills.

From http://www.medscape.com/viewarticle/833004

"Members of the public won't donate if they can't solve a problem, so corporations push people with metastatic disease to the background," Jaggar [executive director of Breast Cancer Action] added.

"Death does not sell products," she summarized.

30 days of facts, Day 12

From Metavivor: Why We Need You

100% of breast cancer deaths occur because of metastasis, and almost 100% of people whose breast cancer has metastasized will die from it. In the United States alone, this means that more than 40,000 vibrant lives are lost each year.

Despite these stark realities, the popular breast cancer fundraising movements give on average only 2% of their research funds to researching metastasis. Instead, their primary focus is on prevention, which does nothing to help those already diagnosed, and early detection, which does not impact those facing the ultimate death sentence of stage 4 breast cancer. And while only 6% - 10% of initial breast cancer diagnoses are metastatic, 30% of patients diagnosed with earlier stage breast cancer will eventually develop stage 4 breast cancer and die.

Metastatic/Stage IV breast cancer is that which has spread to other parts of the body - most notably the bones, liver, lungs, and/or brain. This is the ONLY breast cancer that kills, hence the argument about whether early detection saves lives. 

From above:

• only 6-10% of initial breast cancer diagnoses are metastatic
• 30% of patients diagnosed with earlier stage breast cancer will eventually develop stage 4 breast cancer and die
• the popular breast cancer fundraising movements give on average only 2% of their research funds to researching metastasis

You read that right. 2% of fundraising goes toward the only breast cancer that kills. 

How you can help

30 facts in 30 days, Day 11

109 die each day from Metastatic Breast Cancer in the US. (That's like a major plane crash happening twice a week, every week, all year long!)