Pinktober Guest Post: Chris Welander

Pink-to-ber n A portmanteau coinage used by many people who live with breast cancer to refer to October, the Breast Cancer Awareness Month, which is heavily dominated by marketing in the color pink and cute tags like “Save the tatas”. (See Komen, etc.)

During the month of October 2013, I am running guest posts from people with metastatic breast cancer (MBC) or who are closely involved with someone who has MBC. This was the idea of the wonderful Jody Schoger, and I think some other breast cancer bloggers are participating, too.

Chris Welander is our guest writer today. Chris is a minority within a minority: one of our youthful sisters-in-mets. Diagnosed ten years ago at only 37 years of age, Chris tells her story in a voice that is both strong and plaintive.

I was in shock.

I was first diagnosed with breast cancer in 2003 at age 37. I hit it hard with a double mastectomy, oophorectomy and 10 weeks of chemo. I had a huge breast cancer team. Raised a lot of money for mammograms Went to support groups and really assumed I beat it. I didn’t worry. My iron will plus hard years of treatment was going to fix this.

When I found out two years ago that it had spread to my hip I was shocked. More treatment, lots of surgeries. I left work, lost touch with friends. Thank God for my metastatic support group but I was still young comparatively to many of the members. I felt freaky and lonely.

Last month my cancer spread to my liver after months of completely clean scans. More shock and boy do I feel gypped! I wanted to grow old with my partner. I want to contribute to society with my career and help my mom enter her twilight years. I want to see the pyramids, cook a hundred Italian recipes and read all my bedside books. Now I just make my friends and family sad. I talk to lawyers, doctors, financial planners and make THEM sad. I feel forgotten and still have to fight for care, for my rights and to be heard.

I think all discussion about breast cancer is better than the shame in the old days of not even saying the word “breast”. So I don’t have an issue with pink-azation. But I am invisible in the breast cancer community absolutely…mostly because women can be so stubborn. Like I didn’t work hard enough. Let me tell you I did. And being younger ironically works against my survival. You know what I need now? Money for a trip, cheaper prescriptions, people to say loving things to my partner instead of always asking how I am. And a resolution that agrees metastatic patients have been ignored and that more will be done to fund treatment for us and those after us.

Can it happen? Can we will that?

Pinktober Guest Post: Sylvie F. (en français)

Pink-to-ber A portmanteau coinage used by many people who live with breast cancer to refer to October, the Breast Cancer Awareness Month, which is heavily dominated by marketing in the color pink and cute tags like “Save the tatas”. (See Komen, etc.)

During the month of October 2013, I am running guest posts from people with metastatic breast cancer (MBC) or who are closely involved with someone who has MBC. This was the idea of the wonderful Jody Schoger, and I think some other breast cancer bloggers are participating, too.

Today we will hear from Sylvie F., a member of a French-language IBC/BC support group in Quebec. With her post, we are starting a new phase of Telling Knots – bilingual posts!  Avec ce poste nous commençons une nouvelle phase de Telling Knots- des postes bilingues! 

Sylvie writes (click here for the English):

Hello, je suis Sylvie, une femme de 51 ans qui vit en France, 2 filles, 20 et 12 ans, touchée par le cancer du sein depuis dix ans, des métastases pulmonaires depuis 2012 et qui essaie de retrouver une vie quotidienne la plus normale possible. 

La vie avec des métastases est une vie en sursis, un jour après l’autre mais l’avenir s’assombrit entre angoisse et jours plus cléments, les personnes ne savent souvent pas ce que cela signifie, par exemple mon chef pense que je suis en rémission et si je suis fatiguée maintenant, mon état ne peut que s’améliorer, s’il savait que je vis à l’heure actuels mes moments les plus fastes malgré les séquelles et la fatigue, que l’avenir est un mot qui nous fait peur, avec le spectre de la rechute, des douleurs et de la déchéance de la fin de vie, à l’heure où les collègues font des projets de retraite, il est gentil, je n’ai pas envie de l’assommer avec ce qui risque de m’arriver, on ménage nos proches car la réalité fait peur. On est comme des funambules sur le fil de la vie et un jour ce sera la chute.


Translation:

Hello, I’m Sylvie, a fifty-one-year-old woman with two daughters, aged 20 and 12 years, and I live in France. I have had breast cancer for ten years and metastasis in my lungs since 2012. I am trying to live as normal a life as possible.

Life with metastases is a life on probation, one day after the other but the future gets darker, between anxiety on some days and other days, better. People often do not know what this means; for example, my boss thinks that I’m in remission and if I’m tired right now, it a sign that my condition can only improve (!!!).  If he only knew that in reality, right now is my best time, despite the side effects and extreme fatigue. “Future” is a word that frightens us with the specter of relapse, pain and decay at the end of life, at a time when colleagues are making retirement plans! It`s ok, I don`t want to scare him with what might happen to me. We want to spare our loved ones because the reality is so frightening. We are tightrope walkers on the thread of life and one day we’ll fall off.

Pinktober Guest Post: Kate

Pink-to-ber A portmanteau coinage used by many people who live with breast cancer to refer to October, the Breast Cancer Awareness Month, which is heavily dominated by marketing in the color pink and cute tags like “Save the tatas”. (See Komen, etc.)

During the month of October 2013, I am running guest posts from people with metastatic breast cancer (MBC) or who are closely involved with someone who has MBC. This was the idea of the wonderful Jody Schoger, and I think some other breast cancer bloggers are participating, too.

Today we will hear from Kate, who blogs at Kate Has Cancer. In her mid-forties and the mother of a young child, Kate writes “One thing I think I need to do is improve breast cancer awareness by sharing my experience.” It’s an honor and a delight to host Kate as she shares it here. Please welcome her warmly!

Two Years Under the Mets

Two years ago this month, I really wasn’t worried about the lump my gynaecologist had just found on my breast. You see, it felt just like one I’d had five years before on the other breast — a fullness that went away after it had been determined to be benign. 

This time, I was wrong. But for a couple of weeks, I didn’t know the lump was actually invasive ductal breast cancer. I didn’t know that my weird blood test results were a reflection of the tumours that riddled my liver. And I didn’t know that my aching back wasn’t “out” but broken in several places.

After all, like many people, all I knew was that October = breast cancer = pink. I didn’t know that for most women who get breast cancer, it doesn’t run in their families. I sure didn’t know that men get breast cancer. I didn’t know that in about 10% of the new diagnoses, breast cancer has already spread to distant organs before it’s found. All I had was this vague notion that breast cancer was an easy cancer. 

Foolishly, I didn’t know that metastasized breast cancer cannot be cured. And advanced breast cancer was what I had. Easy cancer? It sure wasn’t easy telling my little girl I have cancer.  No, these last two years haven’t been easy at all.

October of 2011 was eye-opening for me, in many ways. Yet, for a long time, I had trouble believing it was true. Day after day, I would have to remind myself that they had done a biopsy…on my own breast…and it was cancer. But I was supposed to live to be one hundred, like my grandmother almost did. Yet, there I was, dying before my husband’s eyes. Until treatment started, that is. Though it looked very dark for some time, chemo and Herceptin shrunk my tumours.  Then I switched to Tamoxifen, which has held things stable.

My hair is regrown, and I’m walking better, but I know I’m not cured. Two years after my eye-opening Breast Cancer Awareness Month, there is still no cure for breast cancer. And a cure is what I need. Some educated awareness would be nice too.

My little girl tells me that nothing is impossible. She’s a smart girl; maybe she’s right.

Pinktober Guest Post: Stephanie

Pink-to-ber A portmanteau coinage used by many people who live with breast cancer to refer to October, the Breast Cancer Awareness Month, which is heavily dominated by marketing in the color pink and cute tags like “Save the tatas”. (See Komen, etc.)

During the month of October 2013, I am running guest posts from people with metastatic breast cancer (MBC) or who are closely involved with someone who has MBC. This was the idea of the wonderful Jody Schoger, and I think some other breast cancer bloggers are participating, too.

Stephanie wrote today’s post. Steph is a 40-something single mom to an adorably spunky 4 year old named Katy. She was diagnosed with Stage IV breast cancer only 4 months after she adopted Katy from Ethiopia. She continues to work, play, love and live with grace and gusto. Steph blogs at Finding Family, where this post first appeared. Let’s welcome her with our famous Telling Knots comment love!

= = =

And so it begins – pink is everywhere

It creeps up on me every year, the pinkwashing of every product from soup to nuts (literally and figuratively). And unfailingly, I am asked how I feel about it by friends and strangers alike. Well that’s a complicated question and one that’s been answered in every form by every type of person you can imagine. Survivors, caregivers, experts in fields related and unrelated to cancer and also the average joe. I can’t say what it means in a broad scope. I can’t even say what it means to me because it changes yearly, hell even daily. But as a single mom, coping with a diagnosis of metastatic stage IV breast cancer I’ve learned to go with the flow. If I feel like Pinktober sucks that day, I can say that. The next day I might be more optimistic.I’ve discovered there’s a cycle I’ve gone through since I first noticed there was such a thing as a pink ribbon. Similar to the stages of grief (which a diagnosis brings on anyway), the pink ribbon has had stages of feelings.

Blissful Pink
Still in the sunshine and butterflies pink, blissfully ignorant of it all, just noticing the pink, not sure what it means or why I should care. “That’s a pretty pink ribbon, and breast cancer seems bad so it won’t hurt if I donate to something helping it.” “Oh, breast cancer. My neighbor’s sister had that but she’s cured now.” 

Desperate Pink
Crap, crap, shit hitting the fan pink. Now I have it, what do I do with it. Get a kick-ass wig, a prayer shawl and a parking pass at the hospital.  “Well the pink ribbon helped others, it’s sure to help me too.”

Invisible Pink
Pink? What pink, I don’t have breast cancer anymore pink. Get a certificate for finishing treatment, get hair back and try to forget it ever happened. It’s the head in the sand approach that doesn’t really work when it’s everywhere. “Pink, sure it’s all good but that’s behind me now, I don’t need it anymore.”

Angry Pink
Despair and anger from the depths of my soul pink. Goddamn pink ribbon didn’t fucking do anything for me, why should anyone else get to feel good about it. And why should they anyway, it’s not like it’s cured or anything. “This wasn’t supposed to happen, the pink ribbon said I was cured.” “What good is early detection if it doesn’t do anything to the outcome?”

Amicable Pink
Just like an amicable divorce is still a divorce, guess what, cancer is still a terminal disease pink. Regardless of the statistics, someone will die from it. Maybe not you but someone. Does that mean we shouldn’t have raised awareness? Does that mean it should be all about me, the ‘loser’ in the fight? Guess what, I haven’t lost yet. I’m still a survivor, even if my pink is a bit tarnished and battered. Let’s just not forget that for all the early detection and ‘cured’ survivors, there’s someone out there living the battle every day. And living with gusto and grace. “Yes I have breast cancer but it doesn’t have me, and it shouldn’t have you either.”

On any given day, I might fluctuate between some or all of these stages. I wholeheartedly support my meta-sisters in the fight to remember the 30% of us who don’t get to forget it ever happened. I also support the early detected, treated and released survivors who are lucky enough to be in the majority. Sure wish I could be one of you and I hope you can stay there forever. But as long as I can’t, consider me thankful to be here to debate the issue.

Pinktober Guest Post: Jen

Pink-to-ber A portmanteau coinage used by many people who live with breast cancer to refer to October, the Breast Cancer Awareness Month, which is heavily dominated by marketing in the color pink and cute tags like “Save the tatas”. (See Komen, etc.)

During the month of October 2013, I am running guest posts from people with metastatic breast cancer (MBC) or who are closely involved with someone who has MBC. This was the idea of the wonderful Jody Schoger, and I think some other breast cancer bloggers are participating, too.

Jen wrote today’s post. Her story is very special because she is one of the very view metsers that have gone into remission. Jen was diagnosed in 2008 at 41 years old with Stage IV breast cancer (liver and bone mets),  Her2 and ER positive.  She is a single mom with two daughters. Fortunately, Jen had a complete response to chemotherapy and has had no evidence of disease (NED) for over five years.  She’ll be on Herceptin for the rest of her life. Let’s turn it over to Jen now; please give her lots of comment love!

. . .

Oh the funny looks I get when people ask if I am doing the Komen Race for the Cure and I politely say I do not support Komen.   WHAT??  You have breast cancer?  WHY?

Well, I guess I wish they would change their name.   Komen is not for the cure.   The cure is not a hideous pink awareness campaign.  The cure is not about pom poms and awareness.   The cure is completely about research.   Komen gives less than 18 percent toward research and only 3 percent towards metastatic breast cancer research.  For clarification, early stage cancer does not kill.   Metastatic breast cancer  is what kills.

Thirty percent of early stage breast cancer will eventually turn metastatic.   And 97 percent of metastatic breast cancer patients die.   With all this awareness, it is amazing how many women are totally misled.    After 8, 10 or 15 years, the cancer has returned and they are dumbfounded because they were told they were 98 percent cured. That 98 percent was a five year survival rate which is touted constantly.  Seriously, these poor women are in shock that they are now metastatic. How often does the awareness campaign cite these statistics????

What can I tell you about being a metastatic breast cancer patient?   I was diagnosed at the age of 41 with Stage IV right from the start.   I found my own lump and the mammogram could not pick it up even though it could be felt.  Neither did the ultrasound.  When finally diagnosed six months later, I had Stage IV cancer spreading to my lymph nodes, liver and bones.     I am a single mother of two daughters.   I work full time and have had to continue working  full time as I am the sole source of income and insurance.

Since May 2008, I have had treatments every three weeks  and that is over 100 treatments so far.  The thing about metastatic cancer is that I will never be done with treatments as long as I am alive.   They may change as treatment fails but I will always be on treatment.  I am lucky as my treatment, for now, has only a few side effects and I can manage fairly well.   For the first six months, I was not well at all and many others live years struggling like this.    What people do not realize is that by February every year, I max out my out of pocket expenses and immediately have $2500-$3000 uncovered expenses.   Not to mention the co pays with doctor’s appointments and prescriptions.   Also, I have to take off work one afternoon every three weeks.      Finally there is the dark cloud over my head saying, “you have a terminal disease”.    Ninety-seven percent will die from this disease.

So when you look at me and see that I look pretty healthy and normal, you should look a little deeper and see that I am afraid, financially burdened, tired, and angry.   I am angry that pink brain washing, especially in October, has taken center stage and presented a pink happy image that we are really making strides against cancer.   I am angry that so many people make money off our struggles and pawn it off as supporting breast cancer awareness.  I am angry that if Komen was keeping their original mission, the money would be going into research that finds a cure.  I am angry that all this attention and enthusiasm couldn’t be rallied in to research that makes a difference.   I am angry that I know so many wonderful women and many very young women and young mothers who are suffering and dying.   I am angry that no awareness is drawn to the death rate and that this has continued to happen at the same rate as it did back in the 80’s when Komen was started.

October is a very difficult month for those with Metastatic Breast Cancer as we are the ones who feel failed.  Where is our hope?

Pinktober Guest Post: Feisty Blue Gecko

Pink-to-ber A portmanteau coinage used by many people who live with breast cancer to refer to October, the Breast Cancer Awareness Month, which is heavily dominated by marketing in the color pink and cute tags like “Save the tatas”. (See Komen, etc.)

During the month of October 2013, I am running guest posts from people with metastatic breast cancer (MBC) or who are closely involved with someone who has MBC. This was the idea of the wonderful Jody Schoger, and I think some other breast cancer bloggers are participating, too.

Today’s post is exceptional in a couple of ways. First of all, it’s just exceptional. It is a superb response to my candidate for this year’s Biggest Idiocy in Pink award. It is exceptional in the strict sense because Feisty Blue Gecko does not, thank God, have metastatic breast cancer. However, I am including it in this series as an exception because of the first reason. I’m sorry if I just made you dizzy. Please don’t forget to check out Feisty Blue Gecko’s blog, and let’s give her some comment love here. Now, over to FBG:

. . .

It takes quite a lot to rev my temper engine, but this is beyond my comprehension. Offensive, insensitive to the extreme and in my view, utterly useless.

Unbelievable

These are just a few reasons that this has incensed me:

  • October 13th is the sole day dedicated to Metastatic Breast Cancer, in itself woefully inadequate.
  • Many women have had surgery which means that not wearing a bra is in the least extremely uncomfortable.
  • Many of us are trying to hide the fact that our surgery brings significant asymmetry – not wearing a bra would be excruciatingly embarrassing.
  • Most surgery for breast cancer brings at best pain and at worst restriction in range of movement.  Waving your arms in the air (as in the image above) is another indication of how far removed this is from reality.
  • What about men?????

So, what on earth could not wearing a bra for a day possibly achieve? 

Not awareness. Not respect. Not much needed research. Not action.

And certainly not a cure.

Pinktober Guest Post: By me!

Pink-to-ber A portmanteau coinage used by many people who live with breast cancer to refer to October, the Breast Cancer Awareness Month, which is heavily dominated by marketing in the color pink and cute tags like “Save the tatas”. (See Komen, etc.)

During the month of October 2013, I am running guest posts from people with metastatic breast cancer (MBC) or who are closely involved with someone who has MBC. This was the idea of the wonderful Jody Schoger, and I think some other breast cancer bloggers are participating, too.

Today’s post is a slightly modified version of a post I wrote at the beginning of this year. If you want to know a little more about me, please take click the link. If you want to make me smile (she solicited shamelessly) please follow this blog and like my Facebook page.

30 percentI live in Israel. According to the Israeli Ministry of Health, about one in eight women in this country will be diagnosed with breast cancer during their lives. Medical sources agree that although only about 6% of breast cancer is metastatic at first diagnosis, close to thirty percent of all breast cancers, including those detected early, will metastasize.

Thirty percent.

My breast cancer was self-detected and them confirmed on my first ever mammography. There was already lymph node involvement and the question of distant mets was raised and dismissed. The primary tumor was about as long as my thumb. All the factors together put the staging at IIB or IIIA. Within a year, metastasis was diagnosed – in my case, to the spine.

Practically speaking, this means that I will never be healthy again. While people can live for several years with bone mets (the most common site of breast cancer metastasis), life will never be the same. Life is never the same for anyone who has lived through a “cancer event”, but for those of us with metastatic cancer it means living with increasingly severe pain and the side effects of pain relieving drugs, with increasing fatigue and the attendant frustration. It means living from treatment to treatment, and a narrowing of one’s sphere of activity and social circle. It means coming to terms with one’s mortality in a very immediate way, while helping loved ones do the same.

These are some of the commonalities among people living with metastatic cancer. But we are still individuals right up to the end. We each have our own personality, coping techniques, level of insight, hobbies, loves, fears. We still have preferences for how to live our remaining time. Some of us strive for continuous positive thinking, some become social or politically active. Some of us reach out to others, and some prefer to be alone. Some are indescribably sad; others seethe with rage. Many of us are all of these things at different times.

I wrote the original version of this post on an iPad while resting in bed. The weather was nice and I wanted to go outside to try to repair some of the ravages that recent storms visited on my garden, but I was exhausted after ten minutes. Some days I don’t even get dressed because I know I’ll be spending most of the day in bed, but on other days I call a friend who takes me on short walks in the neighborhood. Metastatic cancer is helping me learn to be more flexible and to adjust my expectations.

I can’t say I am exactly the same woman I was before the cancer, but I don’t think I’ve changed all that much in some ways. I still prefer to avoid confrontation, and I still use humor as my primary defense mechanism. I still love poetry and novels and movies about people and feelings. I am still fascinated by the “people side” of history,  am still more of a process person than a goal-oriented one, and I am still competitive. (Lexulous, anyone?)

While I was in bed writing this post back in January, the man who helped me by cleaning my house accidentally bumped my bed and the jarring caused me pain. “I hate being like this,” I found myself yelling and then I felt ashamed of myself for “breaking down” in front of him.

He looked at me with kindness and a little smile. “I know,” he said in a broken combination of Hebrew and English. (He is Hungarian and speaks neither language easily.) “For you, this is very difficult. You are a very strong person,” he made a fist. Then he held his arms out in front of him, palms up, and swept them wide open. “And you love life, living,” he said.  “It is very hard for you.”

Yes and yes.

Addendum, October 2013. When I wrote this post, I was still refusing narcotic pain relief. Ten months later, I am taking it–not as often as my doctor would like, but more often than I want to. Almost daily now, in fact, even though I’m pretty good at dealing with pain due to many injuries in childhood and multiple orthopedic surgeries as an adult.

In the intervening months I’ve had to stop working in my primary profession. I’m grateful that I have a second skill that allows me to work at home, as I’m able. My sweet Hungarian helper had to quit because of back trouble, but we’re still in touch. I have a wonderful new helper now.

I’m going through a hard patch right now, physically and emotionally, due to cancer and other things. I’m very grateful that I have a profound knowledge that the only constant in life is change.

Pinktober Guestpost: Bonnie Suter

Pink-to-ber A portmanteau coinage used by many people who live with breast cancer to refer to October, the Breast Cancer Awareness Month, which is heavily dominated by marketing in the color pink and cute tags like “Save the tatas”. (See Komen, etc.)

During the month of October 2013, I am running guest posts from people with metastatic breast cancer (MBC) or who are closely involved with someone who has MBC. This was the idea of the wonderful Jody Schoger, and I think some other breast cancer bloggers are participating, too.

This next guest post is by Bonnie Suter. Bonnie is 47 years old and has been married for 24 years.  She has two sons; the18 year old is at Seton Hall University, and the16 year old is a junior high school. She is an avid tennis player.  Bonnie was diagnosed in October 2011 with Her2 +++ stage 4 breast cancer.  Please follow her at www.caringbridge.org/visit/bonniesuter. Let’s give Bonnie some comment love!

Image credit: diego_cervo / 123RF Stock Photo

Image credit: diego_cervo / 123RF Stock Photo. Used with permission.

My name is Bonnie Suter and I was diagnosed with Stage 4 Metastatic Breast Cancer Her2 triple positive on October 13, 2011- yes – on National Metastatic Breast Cancer Day.

I had a clean mammogram 2 years prior.  My symptoms began in June 2011, as my back was killing me, and it was affecting my tennis game.  By August, I started going to the chiropractor.  After 2 months he told me that I was not getting any better and I needed to go to the Dr. and have blood work drawn.  My reply, “Why, do you think I have cancer?”  which of course I was joking.  I always look back at how I said these fateful words.  I went to the Dr. on Friday and had mammogram and ultrasound.  Had biopsy on Monday.  Was told on Tuesday I had cancer.  Had pet scans on Wednesday.  Met with doctors on Thursday and was told I had 2 years to live. 

I can’t wait to celebrate on October 14th 2013!   I will no longer be part of the 2 year life expectancy statistic! 

I was diagnosed at the beginning with mets to my spine, liver, 4 nodules and right breast.  I had so many tumors they could not count them all.  At this point I had trouble walking as my pain in my back would make my entire body seize up.

My treatment plan:

October 2011- Diagnosed and 5 day radiation treatment to my back.  Started Abraxane/Herceptin/Xgeva.

April 2012- Right Masectomy

July 2012- Abraxane no longer working- started Tamoxifen.

September 2012- Tamoxifin- Not working. Switched Dr/Hospital.  Enrolled in TDM1 clinical trial.  New mets found in the pre-trial MRI/Pet scan- 11 brain mets, 1 tumor in right lung, and 5 fractured vertebrae.

October 2012- Whole Brain Radiation (by April down to 2), started TDM1- amazing results- all liver tumors gone, most spine tumors gone or shrunk considerably.

August 2013- TDM1 no longer working and up to 4 brain tumors.

September 2013- Tykerb, Xelota, Herceptin, Xgeva.  When these stop working I will move on to the next drug.

I am 47 years old, married, and have 18 & 16 year old sons.  I continue to play tennis twice a week, and be active even though I have 4 fractured vertebrae that have not healed.  I go to acupuncture for my pain—this really works! 

I plan to be part of the AMAZING, STRONG women across this country that fight stage 4 metastatic breast cancer each and every day… and we will make a new statistic of our “life expectancy”.  

My strongest advice is to make sure you find a doctor that believes in you, that always has your best interest at heart, that is looking for new ways for you to survive!!!!  Always have a voice in your treatment plan.  If your doctor does not make you feel at ease and listen to your input- find another doctor!

LET’S INSPIRE WOMEN TO LIVE!!

Pinktober Guest Post: Katherine O’Brien

Pink-to-ber A portmanteau coinage used by many people who live with breast cancer to refer to October, the Breast Cancer Awareness Month, which is heavily dominated by marketing in the color pink and cute tags like “Save the tatas”. (See Komen, etc.)

During the month of October 2013, I am going to be running guest posts from people with metastatic breast cancer (MBC) or who are closely involved with someone who has MBC. This was the idea of the wonderful Jody Schoger, and I think some other breast cancer bloggers are participating, too.

This post is by Katherine O’Brien. Katherine has been living with metastatic breast cancer since 2009. In addition to editing a trade magazine for commercial printers she blogs at I Hate Breast Cancer. Please give her some comment love, and don’t forget to visit her blog!

Katherine O'BrienI am the youngest of seven siblings—as you might guess, I grew up in a big Irish Catholic family. My mom converted to Catholicism prior to meeting my father. Her family was Jewish but not very religious. Although my mom was very funny, she was quiet and almost never spoke about herself.  (I’ve told Mom’s  story here.)

When I was 15, my mom was diagnosed with inflammatory breast cancer. This was in 1981 so there was no Internet and very little information or support for patients. I remember the American Cancer Society volunteer came to our house with a foob after my mom’s mastectomy. But the Komen organization wasn’t launched until 1982, so this was about a decade before Breast Cancer Awareness Month achieved its massive place in the public consciousness, thanks largely to SELF magazine.

My mom died in 1983, a few weeks after my high school graduation.  I can’t recall the treatments she had—I know she had radiation and chemo and sometimes she was hospitalized to get chemo. Treatments in those days were truly brutal. The drugs we are given today are no less toxic, I would guess the difference is anti-emetics have improved.

Sadly outcomes really haven’t. The number of US  women and men who die each year of breast cancer is still approximately 40,000—a number that has not changed much in the last 20 years.

Prior to my own diagnosis in 2009, I never participated in a breast cancer walk—I don’t recall going out of my way to buy pink ribbon merchandise, either.  If I felt anything, it was resentment—my mom died at 53. Seeing the joyous marchers with their wacky pink outfits didn’t inspire me. It made me think of a disease I had pushed far from my mind and all of the things it had taken from me.

I assumed all of the breast cancer awareness groups were one entity. I didn’t realize there was Komen, Avon, Y-Me (now defunct) and other groups. I also was confident I wouldn’t get breast cancer.

I also assumed my mom’s cancer had something to do with having her children later in life. I somehow DID know that people of Ashkenazi Jewish descent are at a higher risk for breast and ovarian cancers, but I reasoned that since most cancer isn’t hereditary, my mom’s probably wasn’t.  Also—given that my breasts had the general contours of two eggs, sunny side up, I figured I was safe. How could I get breast cancer? I hardly had any breasts.

I was “too busy” to get a mammogram at age 40. The truth is that I was probably afraid to go.  I finally went at age 43…I didn’t have any symptoms or anything.

Eventually I was sent for a battery of tests in preparation for a mastectomy. During one of these, a bone scan, it was found my breast cancer had escaped my breast and set up a small presence in my spine.

My cancer has remained under fairly good control. People can do well for a long time with bone-only disease.  I was on tamoxifen for two years and am currently on Femara.  Although it’s not standard of care, in some cases doctors believe surgery can be beneficial, so I had a unilateral mastectomy two years ago.

My cancer isn’t considered hereditary—I’m not a carrier of the BRCA1 or BRCA2 mutations.  My disease is ER/PR+ and HER2-. This is the most common of the three known breast cancer subtypes. Each has different signaling pathways and growth factors.  Thus, survival rates vary significantly among patients.

For one of the subtypes, triple negative metastatic breast cancer, there is no identified targeted therapy that attacks only the cancer cells.  For patients with this type of breast cancer, chemotherapy helps the disease, but patients must live with cytotoxic side effects that impact quality of life.  And, for metastatic breast cancer patients, treatment never ends.

When I was first diagnosed, I was angry about Breast Cancer Awareness Month. Volunteering with the Metastatic Breast Cancer Network (http://www.mbcn.org) has helped me channel my energies in a different, more positive direction. We just conducted our annual conference—we want people to know that they are not alone in dealing with this disease. In telling our stories, we hope to achieve better outcomes in the clinic.

National Metastatic Breast Cancer Awareness Day is October 13. Here are 13 Things Everyone Should Know About Metastatic Breast Cancer.

Cancer Is Not Cute, or Why Pinktober Makes Me Queasy

Pink-to-ber A portmanteau coinage used by many people who live with breast cancer to refer to October, the Breast Cancer Awareness Month, which is heavily dominated by marketing in the color pink and cute tags like “Save the tatas”. (See Komen, etc.)

(The following post appeared in a slightly different form on April 6, 2013.)

 Cancer isn’t cute. It is a mortal illness. It disfigures. It kills. The treatment involves cutting off pieces of your body, killing living tissue with radiation, poisoning your system with chemotherapy. The treatment can have life-long effects on your health and well-being   And that is still no guarantee. Thirty percent (almost one third!) of women diagnosed with breast cancer AT ANY STAGE will end up with distal metastasis.

To be clear, distal metastasis means Stage IV breast cancer. Stage IV breast cancer is terminal cancer.

Cancer isn’t cute, and breast cancer isn’t “the good cancer”. How can anyone possibly call a disease that kills almost one-third of the people who become ill with it “good”? This isn’t about boobies or tatas—it’s about a killer disease. When I was first diagnosed I didn’t give two toots about saving my “girls”; I wanted the cancer out of me.

When I was first diagnosed, I experienced and conceptualized the cancer as a rapist inside me. GET THIS THING OUT OF ME! There was nothing cute about it. When I had my breast and lymph nodes removed and sat with surgical drains coming out of the incisions and I couldn’t lift my arm high enough to hang up the laundry, there was nothing cute about it. When I was having my first round of chemotherapy and all I could vomit was bile and I could barely hold down water – there was nothing cute about it. When I had first and second degree radiation burns over two-thirds of my chest from the daily radiation treatments – not cute.

Well-meaning as they may be, pink ribbons and cutesy “awareness” campaigns make me angry. To me, they feel belittling. They make me feel ignored. They make me feel cast aside because I have a a disease that is killing me. Go ahead and have a great fund-raising campaign and use the best PR tricks you can, but please don’t ignore the reality. Cancer isn’t cute, not even at Stage I. It bears repeating: thirty percent (almost one third!) of women diagnosed with breast cancer will end up with distal metastasis.

We don’t know who will belong to the 30% and we don’t know how to reduce the number of people who will get recurrences and/or mets. Yes, awareness is nice, but research is better. If you donate to a breast cancer cause, please know where your money is going. Give to organizations that are actively funding research. You can always buy a pink ribbon at the notions counter.

This month I will be featuring guest posts from men and women who have been affected by metastatic breast cancer. There are still open slots. If you’re interested, please read the Call for Posts.