Thursday, October 30, 2014

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.

Wednesday, October 29, 2014

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.

Tuesday, October 28, 2014

Sunday, October 26, 2014

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."

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

Friday, October 24, 2014

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. 

Thursday, October 23, 2014

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.

Wednesday, October 22, 2014

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!

Tuesday, October 21, 2014

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. 

Monday, October 20, 2014

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...

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. 

Sunday, October 19, 2014

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

Saturday, October 18, 2014

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!

Friday, October 17, 2014

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

Thursday, October 16, 2014

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

Wednesday, October 15, 2014

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.


Tuesday, October 14, 2014

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.

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.


"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.

Sunday, October 12, 2014

30 days of facts, Day 12

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

Saturday, October 11, 2014

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!)

Friday, October 10, 2014

30 days of facts, Day 10

As we come up on October 13, National Metastatic Breast Cancer Awareness Day, let's talk about that *other* thing that's been promoted for the same day: "No bra day." The poster says "support breast cancer." No, I don't support it. In fact, I'd like to return mine, thanks. And "set the tatas free?" Really? So what about those of us who don't have any? (And those of us who, for whatever reason, cannot go braless without pain? This is blatant sexism: it in no way helps anyone, other than maybe people who just want to ogle braless breasts.

More tomorrow on Metastatic Breast Cancer.

Thursday, October 9, 2014

30 days of facts, Day 9

Lymphedema currently has no cure and requires ongoing management in the form of compression garments, bandaging, PT and more. But lymphedema treatment IS NOT mandated. Whether a patient has primary (occurring on its own) or secondary (caused by another disease or condition, such as lymph node removal following breast cancer), insurance can legally deny treatment. The Lymphedema Treatment Act seeks to mandate desperately-needed treatment, so that patients can get their LE under control, keep it from progressing, and find some relief.

The Lymphedema Treatment Act is a federal bill that aims to improve coverage for the treatment of lymphedema from any cause. Untreated and undertreated lymphedema is progressive and leads to infection, disfigurement, disability and in some cases even death.  Thus, prognosis for the patient is far worse and treatment more costly when the disease is not properly managed.


30 facts in 30 days, Day 8

I got busy and missed yesterday, so I'll put up days 8 and 9 today.

"Although they experienced classic symptoms of post-surgical lymphedema, many breast patients didn't recognize the condition as related to treatment and said they didn't receive any information about it from their healthcare providers..." The link below is a small-sample study, but it echoes my experience. My doctors told me that since I had only had a sentinel node biopsy (7 nodes removed total between the two sides), my risk was negligible. In fact, they did not even recognize it as lymphedema when I pointed the swelling and redness out to them. My PT diagnosed it: lymphedema in my right axilla, upper arm (now also in my hand), upper chest, breast, torso, and left abdomen.

Breast cancer: lymphedema awareness lacking

Tuesday, October 7, 2014

30 facts in 30 days, Day 7

About a year ago, a list of the 50 worst charities in America was released, and 5 of them are pink. From paying for professional fundraisers to lining their own pockets, these are some NOT to send your hard-earned cash.

I think tomorrow when I have more time (I just got a really nice wholesale order from a big fiber company!!), I'll talk more about lymphedema, since that's what I'm personally struggling with at the moment. 

Monday, October 6, 2014

30 facts in 30 days: Day 6

Can you imagine, in the midst of all the pink and sexualized slogans, being a man with breast cancer? While comparatively rare, men can – and do – get breast cancer. Cute slactivist social media games that admonish "keep it secret from the men" only serve to further marginalize men, when they should be included and educated."

" make up about 1 percent of all invasive breast cancer cases, according to the American Cancer Society. Each year, that amounts to about 2,400 new cases scattered across the country. About 430 men are expected to die from the disease this year."

"I never... would have thought that a man could get breast cancer."

Sunday, October 5, 2014

30 facts in 30 days, Day 5

Since the month is young and many people are asking "then what CAN I do?" I'm sharing a post from the founder of Badass Survivors, Melanie Childers. Short post from me today - please read her words.

Don't buy pink: 5 ways to make a real difference for breast cancer

Saturday, October 4, 2014

30 facts in 30 days, Day 4

I'm kinda cheating on today's post, guys - I'm sharing something from Kathi Kolb, aka The Accidental Amazon. I really want to get into the marginalization of folks with mets/Stage IV and the pathetic lack of funding for metastatic breast cancer, but I don't have the energy right now. Ironically, it's because of my own cancer treatment side effects: I'm having a very painful lymphedema flare. So I'm going to give you Kathi's post, and in the days to come I'll talk about mets, and also about lymphedema.

When any of us is first diagnosed with breast cancer, one of our first visceral reactions is fear. And there is a good reason for that. Close to a third of those of us who are diagnosed with invasive breast cancer will develop mets. Even for those of us diagnosed with DCIS, non-invasive breast cancer, up to 10% will develop invasive breast cancer, and that 10% will then be at a 30% risk for developing mets. And yet, a miniscule percentage of research funds goes to finding effective treatment, prevention and cures for metastatic breast cancer.

From Metastatic Breast Cancer by The Accidental Amazon

Friday, October 3, 2014

30 facts in 30 days, Day 3

Melanie Childers of Badass Survivors shared this yesterday on Facebook, and I told her that it would be today's fact.

From We're Aware - Now What? A patient's perspective on the need for research, a Healthline article by Ann Silberman of But Doctor, I hate pink!
The Susan G. Komen Foundation (also known as Komen), by far the largest breast cancer charity, only donates 17 percent of their millions to fund research grants. And MBCN estimates that less than five percent of all charitable money goes towards research for metastases, the only form of breast cancer that kills. The rest of the money is funneled back into awareness and education. Races are sponsored, literature is distributed, breast self-exams are advertised, and of course, mammogram machines for clinics are funded. But little is spent to help save those who are dying in the last stages of the disease.

Most people are unaware of the reality of breast cancer, but even fewer are aware of the reality of stage IV/metastatic breast cancer. It's not an instant death sentence as it once was. Many people - because men get breast cancer too - live for years with stage IV breast cancer, changing treatments each time the current one stops working. Sadly, not only are stage IV patients marginalized by the lack of funding, but also by other patients. It's HARD to talk about, and a lot of early-stage patients, frankly, don't want to be confronted by their worst fears.

I think more on this will be tomorrow's fact. 

Thursday, October 2, 2014

30 Facts in 30 Days, Day 2

How about something practical you can do in just a minute?

More than 20 years after the introduction of the pink ribbon, breast cancer “awareness” has become a multibillion-dollar industry that benefits corporations more than women’s health. This flood of products and the widespread culture of “pink” have hijacked the breast cancer movement.
Join breast cancer activists from across the country and send a letter to corporations that are responsible for some of the most outrageous pink ribbon promotions.
Together we demand that they Stop the Distraction and turn instead toward clear alternatives that can truly make a difference to all women, from all communities who are at risk of and living with breast cancer.

Click the link above and add your name! Then, when you see other offenders, ask to see a manager. Politely ask if they have any idea where the money from the tchotchkes goes, and if they don't, ask for the number to corporate. Please, please, don't direct your righteous anger at them - these types of things come from head offices, not local branches of major companies!

Yesterday I was at Walgreens, and when I was checking out, the screen asked if I wanted to add a donation to Komen for the Cure. Of course the answer is HELL NO, but I gave the clerk a really quick "why Komen sucks" which he had no idea about. (See this 2012 post from Kathi Kolb, aka The Accidental Amazon for more.) I went to the front counter and asked the ladies there - gave them a little bit more information, doing my best not to word-vomit on them, and asked who I could get in touch with. They told me that the best number is the one on my receipt, and that I'd either be able to speak to someone directly, or told where to write. I'm going to make that phone call today, and will edit when I have more information. My plan is to ask if whoever makes these decisions has any idea the controversy surrounding Komen, and whether they would consider switching to a different organization, like Metastatic Breast Cancer Network.

More tomorrow!

Wednesday, October 1, 2014

"Happy" Pinktober, aka 30 Facts in 30 Days

It's Pinktober! And you know what that means. A plethora of largely-meaningless pink ribbons abounds everywhere you look. As a self-professed research junkie and pink-hater, I've decided to present 30 facts in 30 days to counteract the misleading bounciness of those happy smiling faces that often accompany the ribbons. I'll probably talk about other stuff too (hello, painful lymphedema flare), but in the meantime, here's Day One of Pinktober:

30 facts in 30 days Day 1: "From the beginning, the pink ribbon connoting breast cancer awareness has been embroiled in controversy. Today, some members of the movement wear it proudly, giving thanks for both the symbol and its attendant charity-dollar largesse. Others hate it with a passion. But to much of the media and the world at large, the ribbon is the breast cancer movement. Where did the ribbon come from, where is it going, and what has it meant along the way?"

The woman was 68-year-old Charlotte Haley, the granddaughter, sister, and mother of women who had battled breast cancer. Her peach-colored loops were handmade in her dining room.

I encourage you to do your own research, to make sure you understand where your dollars are going before you spend them on pink ribbon-adorned items.