don’t ignore stage IV

“Handling it so well.”

For some unknown reason, I have had loved ones and acquaintances tell me, “Lara, you have been handling your Stage 4 so well.” Every time I have heard this, I’ve been taken aback by this comment. Why would anyone think I’m handling my disease so well?

I have lived alone for the past 6 years, and I’ve been working from home for 2.5 years now. I’m not around any single person for extended periods of time. I stopped running, so I’m not seeing my running friends on a regular basis anymore. This is the most isolated I’ve been in my entire life.

Yet, I get these remarks about my state of mind. One day, I’m going to respond, “Am I handling it so well, or do you only see what I want you to see or hear?”

The weeks leading up to my 3-month scans always do a number on my mental state. I wonder, “Is this going to be the scan that changes everything?” As of right now, my cancer does not appear to be motivated and content to stay put in my sternum. I used to be anxious and scared out of my mind that my cancer was going to come back stage 4, and now that it’s confirmed stage 4, I’m anxious and scared out of my mind that my cancer is going to spread throughout my body.

How is anyone supposed to “handle this well”? I don’t think it’s socially acceptable for me to be periodically shrieking to people, “Do you know how fucking scared I am?” I have to deal with this the best I can because again, I live alone and there’s nobody coming along to “save me” and take care of me when I can no longer take care of myself. You know how terrifying that is?

What’s going to happen to me?

Living with stage 4 cancer is like staring down a mama grizzly bear alone in a forest. It’s not a matter of if but when.

I honestly believe several of the people who have said this to me wanted to convince themselves that I’m okay and totally don’t need any help. That way, they don’t have to ask or actually do anything. Out of sight, out of mind, amirite?

I am so appreciative of my friends and loved ones who have not assumed my state of mind and sincerely ask how I am doing. I am definitely grateful to be able to still work because it ensures a 40-hour reprieve from all things stage 4 cancer. This disease is full of emotional landmines, plus all the side effects that come with treatment (i.e., joint pain, weight gain, stomach problems, sleep issues, etc.).

I am handling this the best I can, but for the love of dog, don’t ever assume you know what’s going on with me. That just infuriates me.

Back to Work

Today was my first day back at work, and I beyond excited to be back. Am I ready? Mentally – hell to the yeah. I am someone who loves and appreciates a routine. Recovering from major surgery and dealing with the fact that I have metastatic disease has honestly made these past six weeks feel like six months. All I had to do each day was think about my poor health and catastrophize my fate.

Needless to say, time dragged.

Work will be a welcome reprieve from my worried mind. I can focus on audit, fraud, and whatever else I have been tasked with. Work will allow me to be more than just a cancer patient. I mean, yeah, I’m a cancer patient, but I can put on a different hat for the majority of my week.

Plus, I like working, and I really love the team I am on at work. We are a great, supportive team. I truly enjoy figuring things out, editing, research, and analysis.

Am I ready physically? Maybe. I am tired, friends. My body feels foreign to me now. For the last couple of days, my legs have felt heavy, and I feel winded just walking up stairs. This time last year, I ran a marathon!

The gyn oncologist cleared me for exercise today at my 6-weeks post op appointment, and I am already setting goals for myself. I would love to be able to run a 5K in the spring. Even if I am slow as hell, I am going to keep moving until my body tells me I have to stop.

I swear to GOD, I will crotch punch anyone who cries at the sight of me running and refers to me as inspirational. Never ever ever ever ever make me the subject of any inspiration porn.

I just want to live my life, and I’m going to do whatever I can to have more good days than bad.

This, I promise

Understandably, I have been thinking a lot about my priorities since my oncologist told me my cancer is Stage 4. What do I want to do with whatever time I have left. Don’t get me wrong – my oncologist at no point has told me to start getting my affairs in order and preparing for death.

However, the thing about metastatic cancer is that you have no way of knowing if you’re going to be one that responds well to treatment or poorly to treatment. Right now, as far as we know, the cancer is only in my bones: confirmed in my sternum and possibly in my spine. Cancer is smarter than all of us, and I have no doubt it’s already thinking of where it wants to go next.

As I recover from my surgery, I have been thinking about what I really want to focus on and try to achieve, and what time-sucking activities should I just let go. I hope and I pray that the side effects from the upcoming endocrine therapy will not be so bad so that I can go back to work.

I want to go back to work, I really do. I thrive in a structured environment, and I enjoy having a purpose and teaching others what I know. I’m an internal auditor, which I get isn’t like making scientific breakthroughs or saving lives. I contend that even in the normal, every day jobs, you can always make a difference in someone’s life by small acts. Maybe my enthusiasm for research and dogged determination to figure out the answer will rub off on a fellow coworker?

I also work for a company and a team that know about my stage 4 diagnosis. I truly believe that this company, if possible, will want to help fight against metastatic disease and the criminal underfunding of metastatic breast cancer research. I still have zero desire to be, what I call, cancer famous. If I have to put myself out there, though, to put a face to metastatic breast cancer and the importance of research, I will do it.

This, I promise, is my solemn vow: I am not going to go quietly. Please don’t mistake this statement as some declaration of mine that I’m going to “fight” cancer and win. Cancer is not a battle or a fight, and I’m not going to “beat it” or “win.” It is a deadly disease that will eventually kill me just like it killed my mother (hmm, maybe I shouldn’t be a motivational speaker, eh?).

Two generations of Metastatic Breast Cancer

I intend to make as much noise as I can for as long as I can about the importance of metastatic cancer research and the insidious PTEN mutation that caused my cancer. When I was considered to be an early stager, I was often described as outspoken or very vocal. Well, guess the fuck what… that’s just a preview of what’s to come. Ideas are brewing.

Metastatic breast cancer killed my mother, and I was told I had stage 4 metastatic breast cancer at the same age she was when she died. I was maybe 3 years old when my mother was first diagnosed, so this disease has been a part of my life for more than 3 decades, almost 4. I’ve never wanted to be defined by cancer, but we don’t always get what we want.

I’m not going to go quietly. I plan to do something about this, and it’s not always going to be positivity and rainbows. If I’m angry, I’ll be angry. Same goes for sad, depressed, happy, or hopeful. I’m going to feel all the feelings, and when the time comes for me to meet my mother again, I hope she knows I gave it my all.

We Need to do Better

Most readers of Get Up Swinging know that my number one priority to my breast cancer is more money for research for metastatic breast cancer. You know, I do it for my mom, who died at age of 40, only two months shy of her 41st birthday. I’ve also had breast cancer myself, and I live with the knowledge that my disease can have a metastatic recurrence any time for the rest of my life.

All of that’s true, but there’s more to why I do what I do.

For my friends who have metastatic breast cancer and young children, I know what it’s like to be that young child. I see the pictures they post, and when I see the early elementary school children, my heart breaks. I see myself in those faces. When you’re a kid, you know something sad and serious is happening but you can’t quite understand actually what is going on with the adults.

I read about my friends’ anguish about just wanting to see their children grow up. I think to myself, “These are the thoughts my mother had as she endured treatment after treatment with three children in elementary school.” I can understand their fear in a way because I am frightened of a recurrence and what is my greatest source of anxiety, is their day to day life.

I know what I’m about to write is going to scare the almighty shit out of my metser friends: I do not have any solid memories of her. I would describe them more like snippets of a dream I’m trying to remember but cannot with any certainty. Years ago, my dad played a recording of her and he had to tell me which voice was hers. I look like her and have the same disease, but I don’t remember her. She’s more a presence and not really a reality. I imagine this was something she feared and did not want to happen, but it did.

There’s a mom-sized hole in my heart that appeared when she died. It’ll never go away. I can fill it up with other sources of love and happiness but it’ll never quite fill the hole left behind by her death. It certainly shaped the person I am now, and I often find myself guided by the thought, “What would Mom would have done?” I also find asking myself when I’m blogging or sending out tweets advocating for change, “I wonder if she would be proud of me.”

When my friends pray for their current treatment to hold out for as long as possible, I think about my high school and college graduations, which she did not see. She did not even see me reach middle school. Those living with metastatic breast cancer want to see their milestones. Research into better treatments is the only way these moms and dads can see the milestones, big or small, happen. Metastatic cancer is smart and cunning, and it’s constantly thinking of ways to make it so the current line of treatment fails for the patient.

Holley Kitchen had a goal, which was to see her youngest son turn 5.  She missed her goal by two days.  Two young boys will be growing up without their mother, and that’s something I know all too well.  Please read Susanne’s blog because her perspective drives home the frustration.

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Credit: Metathriving.com

To my metser friends with children, please know that your children’s memories may fade to what mine are now, but know that they will never forget the love. I don’t remember my mom, but I know she loved me and my brothers more than anything. Your children will know that you did not go willingly and understand the ugly reality of cancer. Please please, do not avoid being in pictures with them if you can help it. You may think you look awful but your children will only see you. Trust me.

I know what it’s like to have cancer and live with the fear of recurrence. I also know what it’s like to grow up without your mother and have no solid memories of her. I would never wish either on my enemy.

That’s why we need to do better. Donate to Metavivor. Don’t buy pink ribbon products. Listen to those who have the most to lose because I promise you, they are the ones telling the truth, not the ones who want to sell tchotchkes.

Why I Am Still Anti-Komen

 

In early 2014, I wrote a blog post about why I was against breast cancer juggernaut Susan G. Komen Foundation.  It was shared, pinned, tweeted, discussed.  While the blog post was shared and liked by many, I don’t know the extent of the reputation hit I may have inflicted upon Nancy & Co.  I truly hope I inspired many to donate their money to much more honorable charities.

Well, now I am here to report on where Get Up Swinging and Susan G. Komen still stand.  To the surprise of no one, I am very much still anti-Komen, and I do not see that changing any time soon (please see below for a list of organizations doing amazing work).

I do not plan to re-hash all the same reasons I have already cited.  That’s the beauty of Nancy & Co: they keep giving us new and improved reasons to despise them and what they are doing to stand in the way of real change.  Today would have been my mother’s 69th birthday.  She died at the age of 40 from metastatic breast cancer.

Nancy, Nancy, Nancy

In a November 5, 2015 letter to the New York Times, my favorite former CEO was not happy about a very well-reasoned article, “A Growing Disenchantment With October ‘Pinkification,’”also published in the New York Times, which had valid points of views from those not wearing Pink Ribbon glasses.  Did Nancy listen to her critics and go, “Man, we’ve really divided the community for which we are trying to help”  Did she do any self-reflection and think, “I need to turn my focus back on the promise I made Susie.”

Of course not. Nancy didn’t address any of these real pressing issues currently happening in the breast cancer community.    Instead, all she did was regurgitate Komen’s history and ends her op-ed with the tone-deaf statement: “Pink Ribbons matter!”

The Pink Ribbon has enabled Komen to stage Races for the Cure with more than 1.5 million participants, partnerships in more than 150 countries and the engagement of more than 100,000 volunteers.

Oh boy, Nancy.  This is another example of why I think you are an evil woman.  You don’t get it, and you don’t want to get it.   What about those who are on their fifth line of treatment or waiting to get into a clinical trial in hopes for another six months with their families?  All you care about is your money-making Pink ribbon empire and your meaningless ribbon, aka the symbol of your life’s wealth.

There was one point in the article, and it’s an excellent point and one that you would think would make The Breast Cancer Charity go, “Holy shit, we seriously have to fix this!”

For all the awareness, they note, breast cancer incidence has been nearly flat and there still is no cure for women whose cancer has spread beyond the breast to other organs, like the liver or bones.

So, congratulations on patting yourself for your ability to rally others around a cause that has affected so many people.  But what about the 40,000 dying every year, a mortality rate that hasn’t changed in two decades?

No, Nancy.  Pink ribbons do not matter.  The lives of the 40,000+ dying of metastatic breast cancer each year in the U.S. matter.  Their partners, their children – the lives of all who have been diagnosed and will be diagnosed – they matter.  They should be the priority  and Nancy & Co. act as if these valid complaints are mere annoyances, like we are a bunch of Internet loud mouths.   The average lifespan of someone diagnosed with stage 4 is 33 months, and a pink ribbon isn’t going to change that.   We need change.  Now.

2015 marks the first time Komen lets you make a donation to metastatic breast cancer research

This past October marked the first time Komen allowed its donors to allocate where they want their money to go, and research toward metastatic breast cancer was one of the options.  It’s 2015, and this is the first time they have done this.  Why has it taken so long?  Could it be that the Komen push-back from all of us Internet loud mouths made some Komen folks realize that their priorities are jacked up?

However, this option only came about mid-October, and it was initially advertised as an option only available until the end of October!  What the deuce?  Did I miss the memo that metastatic breast cancer goes away when the calendar reaches November 1?

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I guess they listened to others also going, “Um, what?  This is only an option until October 31?” and changed their minds.  If you make a donation to Komen, you can still choose your donation to go toward metastatic breast cancer research.

Of course, though, this is still Komen, and they will always find a way to take your money, as pointed out by Bravery, Grace and Badassery.

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Does Komen really need that much financial help for its administrative costs that it still insists on taking funds for metastatic breast cancer research?  Get the hell out with this nonsense.

This organization has been claiming to be in this “for the cure” for the previous three decades.  Shouldn’t research for metastatic breast cancer be the primary focus so many, many years ago?  The only type of breast cancer that kills is metastatic breast cancer.

Komen likes misleading statistics

During Pinktober, the Susan G. Komen Foundation posted a pastel, feminine looking graphic with words and numbers together, which would lead you to believe that we are WINNING this fight on breast cancer:

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Ugh.   Ugh.  Ugh some more.

The five-year statistic is bull, it’s just plain bull.  It’s a misleading statement for a national organization to make, and all it does is make the general public LESS aware about breast cancer.  I’m sure all the Komen supporters saw that graphic on Facebook and said, “Yes, we are winning!  Well done, everyone.  Well done.”

Folks, if you’re reading this, please know that you can still have a breast cancer recurrence after five years.  The cancer doesn’t just peace out once it’s been five years since your initial diagnosis.  We have been led to believe that five years is this magical number and you showed cancer who is boss.  Realistically, though, you can recur 5, 10 or even 15 years after your initial diagnosis, so you can still die from breast cancer but be counted in this bogus statistic.  Theoretically, someone can have an early stage diagnosis in 2012 and have a metastatic recurrence in late 2015.  If they are still alive in 2017, then they are counted in that statistic, even if they die on January 1, 2018.     Do we tell them as they are dying, “Way to go, Jane, you made it past five years since your initial diagnosis.  You are a winner.”

Komen, for the love of Pete, quit sending misleading statements out to the general public that we are winning when the mortality rate hasn’t changed in the previous two decades.

Check out my friend, AnneMarie, crunching some numbers.

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I couldn’t agree with this any more.

Frankly, I’m tired of breast cancer being portrayed as the feel good cancer and being held up as a shining example for early detection which works sometimes or even most times but not all the time and that part of the messaging is conveniently left of of every discussion about early detection.  It’s buzzkill.  It detracts from the message that mammograms are unilaterally helping save lives.  Mammograms are detecting cancer earlier and earlier thanks to constant improvements being made in imaging devices but early detection is just that.  Early Detection.  And early detection is not a guarantee.

Komen and its representatives treat metastatic breast cancer patients like a nuisance

Beth Caldwell, who writes over at the Cult of Perfect Motherhood, recently attended the San Antonio Breast Cancer symposium.  She wrote about her encounter with a member of Komen’s Scientific Advisory Board:

This week, Kelly Shanahan and I had a conversation with Powell Brown, a member of the scientific advisory board for Komen. We explained to him that the metastatic community is largely dissatisfied with the small percentage of funding that Komen spends on research, since research is the only thing that will save our lives. I told him that they need to change their split between the national and the locals so that more money is available for research. His response was that he doesn’t believe Komen will change that ratio, and that Komen would not begin funding more research until the metastatic community gets behind Komen. He said that if we want Komen to spend more on research, we should participate in their fundraising efforts. He said that more fundraising would mean more money available for research. I told him there was no way that our community could get behind an organization that chooses to spend its money on things other than saving our lives, especially given that there are other organizations that spend a much larger proportion of their funding on research, including BCRF, which now outstrips Komen in dollars spent annually on research. His response was that if that’s how we feel, we should just support BCRF instead. And he walked away.

This is what a national leader for Komen feels about the metastatic patient. We are disposable because we don’t fundraise for them. Do not let them fool you into believing they care about us. Our lives don’t matter to them. And that’s why Komen is irrelevant to us. We must and will save our own lives.

Holley Kitchen, whose direct and moving video went viral, also had an encounter with a Susan. G. Komen foundation representative:

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Susan G. Komen Foundation has proven time and time again that it cares about money and donation$, and the lives of those with metastatic breast cancer are secondary.  Metastatic breast cancer is what killed Susan G. Komen, a real woman who died way too young.  Yet when those with stage 4 have stood up to the organization and its representatives, they are told time and time again that maybe Komen will care if they begin raising money for them.

So what’s the point of my anti-Komen diatribes?

Finally, just because I think Komen is an awful organization that has gone way off tracks, it does NOT mean I don’t want you to stop donating toward breast cancer research and programs.  There are so many wonderful organizations that have a mission statement, and (gasp) they are sticking to it.

Why do I keep hating on Nancy & Co.?  Welp, I want to highlight organizations that are awesome and making a big roar out there.  Please consider throwing your support behind these organizations.

  • Metavivor – 100 percent of your donations goes toward researching metastatic breast cancer, and they raise money by selling merchandise.
  • The IBC Network – Did you know that breast cancer can occur without presenting as a lump? Inflammatory Breast Cancer is mostly detected when the cancer is late stage or tragically, stage 4.  It’s an aggressive cancer, and it’s definitely not one that’s ever discussed during our annual Pinktober.  Terry Arnold over at IBC Network is a tireless advocate.
  • Met Up – This is an activist group, which was co-founded by women who have metastatic breast cancer. Read their goals, get involved.  Help their voices be heard.  You cannot call yourself a true breast cancer advocate if you only want to help the “survivors.”

We have so much work that needs to be done.  Recently, the New York Times reported on October 29, 2015 that the incidence rate between white women and African-American women are now equal for the first time.  Previously, women of color were less likely to be diagnosed with breast cancer, but more likely to die from the disease.  Now that the incidence rate is equal, well, does that seem like good news for women of color?  Not in the slightest.

Over all, a black woman given a breast cancer diagnosis is 42 percent more likely to die from the disease than a white woman with breast cancer. An analysis of breast cancer mortality trends in 41 of the largest cities in the United States, published last year in Cancer Epidemiology, found that in some cities the risk is even greater. In Los Angeles, a black woman with breast cancer is about 70 percent more likely to die from the disease than a white woman is. In Memphis, black women face more than double the risk. Black women also are less likely than white women are to be given a diagnosis of early stage disease, and more likely to be given a diagnosis with later stage, and less treatable, tumors, according to the report.

Don’t give up on the cause, even though Nancy & Co. have lost their way.

Mets Monday: Sharon

For this week’s Mets Monday story, please meet Sharon. Before her diagnosis of metastatic breast cancer, she already had non-Hodgkin’s lymphoma. She reached out to me after my friends Carolyn and Susanne posted messages on their Twitters and Facebook asking others for more Mets Monday stories.

What was your age and diagnosis (er+, etc.)? How was it discovered?

I went for my yearly mammogram on October 22, 2013. The tech asked me why my left breast was hard. I told her I’d noticed it too and thought I pulled something at the gym. The radiologist looked at the films and saw a “shadow.” They scheduled me for a diagnostic mammogram with the teeny-tiny paddle and LOTS of pressure and an ultrasound on October 28, 2013. I was told it looked like something was pulling my breast tissue and they wanted to do a core biopsy to be safe, but were sure it was “nothing to worry about.” On November 14, 2013, an ultrasound guided core biopsy was performed. On November 6, 2013, my primary care doctor called and told me the biopsy showed infiltrating lobular carcinoma. She wanted me to see a breast surgeon to discuss the results further and plan the next steps. The breast surgeon told me the tumor was er/pr+, her2-, grade 3. She then scheduled me for a breast MRI on November 10, 2013 and gave me the name of the one and only plastic surgeon that worked with the hospital so I could set up a consultation. She also told me she’d like to work with my old oncologist to discuss treatment options. I told her I was not keen on seeing her since I had been seeing her every three months for follow-up for my lymphoma and she totally missed this, as well as ignoring my complaints of increased fatigue and bone pain in my lumbar and cervical spine. She told me the fatigue was a lasting side effect of chemo and that I was getting old and the pains were just arthritis. She also did a thorough exam of my breasts and abdomen every time I saw her. I didn’t do well on the MRI. The machine was malfunctioning and was very hot and my chest was killing me pressed against the plastic stand with holes for my breasts. The heat and pain was so bad, I asked them to stop the MRI because I was going to be ill. They told me no. I said, OK, you can clean the vomit out of the machine. They shot me out of there like a cannon and ran in with a pan which I proceeded to fill. End of MRI. By this time, I’m noticing that my left nipple is starting to invert. I’m thinking, “This is not good.” The breast surgeon schedules me for yet another core biopsy – same results. I’m thinking about the definition of insanity that I learned long ago. Meanwhile, I’m waiting for my previous oncologist’s office to call me for consultation. The breast surgeon called her after the MRI and I was discussed on a “tumor” board. It took a full two weeks for the oncologists office to call (on November 25, 2013) and they wanted me to wait another week and go to see her in an office not where I work, but 120 miles round trip from my home. I had a bad feeling about the progression I was seeing, I could now feel a large mass in my breast. I also did a self exam in front of the mirror (all my self exams were done in the shower like I’d been taught). When I lifted my left arm the entire outside of the left breast caved in. I called Cancer Treatment Centers of America. My first contact wanted to wait a couple of weeks to get me in for a second opinion so they would have time to get all the tissue and reports from the breast as well as the lymphoma. I told him I was certain it was in my best interests to see someone sooner rather than later. My husband and I saw the intake oncologist on November 29, 2013, the Friday after Thanksgiving. The rest of the appointments were not scheduled until Monday and Tuesday. He asked why they had put me through two biopsies when it was evident that the tumor was aggressive. I told him is guess was as good as mine. He told us he wanted us to have a PET scan the next day. My husband and I had intended to go home and stay overnight on Sunday, we had no clothes. He agreed to schedule the PET scan for Sunday. On Monday, I got the results. Stage IV infiltrating lobular carcinoma with “innumerable” mets to the cervical, thoracic and lumbar spine and “a few” mets to the sternum. I was 54 years old, post menopausal due to early onset menopause from chemo in 2009.
 Sharon

 

What is life like a metser?

At first, it was overwhelming and way too much to process. The person at CTCA who gave me the diagnosis was a surgeon, not a medical oncologist and he did everything CTCA doesn’t stand for. He showed no respect or compassion and was very blunt. I almost left in search of another breast center, but my hubby prevailed and asked me to give the medical oncologist a chance. I’m glad I did, I couldn’t have a better oncologist. But, I was so upset I vomited through all my appointments on Monday and cancelled the Tuesday appointments. I didn’t stop until Wednesday. While I was there, the MO gave me a shot of Xgeva, and a prescription for Anastrozole. The naturopath recommended supplements and gave written instructions to my husband. I scheduled an appointment for March. Now I’m living with a chronic disease. I don’t know how long I’ll be here, but I do know women are starting to survive 10 years or more. I’m hoping to be one of them. The Anastrozole is taking a toll on me, but it’s also kicking the cancer’s butt. At diagnosis, my breast tumor measured 8 centimeters. In March, 2014, it was 1 centimeter. I had a PET scan in July and NONE of the mets were active. My December PET showed one “hot spot” – L4, where I also have some of my arthritis. I do what many of us do: work to educate myself, to be my own advocate, find others who have shared experiences and seek their counsel, give support and hugs when I can and learn to accept them back. I have the standard “Mom” bucket list…I have one son and I want to see him with someone he loves with all his heart who loves him back. Checked that off, he’s marrying a wonderful person in November of this year. Now I want to see my first grandchild. Who knows, if people start spending money on research, I may see that grandchild grow.

Before your diagnosis, would you say you knew anything about breast cancer?

I have dense breasts, so this wasn’t my first rodeo with a biopsy. I had a stereotactic biopsy of my right breast when I was 40. It was pre-cancer (hyperplasia) and has never progressed. I got mammograms every year, did self exams every month. I wish I would have known to hunt for lumps in the shower but look for dimples in front of the mirror. After diagnosis, I did a little experiment. I asked close friends with large breasts if a) they did monthly breast exams (they did), and b) if they ever stood in front of a mirror and held up their arm and looked at the corresponding breast (they did not, but you bet they do now!). The only person that might have seen this sooner was my oncologist. My arms were over my head every three months, I complained about increased fatigue and pain in my cervical and lumbar spine, but she never connected anything. I broke two ribs doing nothing, the oncologist said I fell I just didn’t remember (I didn’t). My primary care doctor took me at my word and sent me for a bone scan (lymphoma loves bone marrow), but it only showed the broken ribs. I remember my oncology nurse well. She told me at the first infusion when I had an allergic reaction to one of the chemo drugs that if I had to have cancer, large B cell non-hodgkins lymphoma was the one to get. Fast growing, so chemo is perfect for it, but not too aggressive so there is no time to put it in check. She then said, “At least you don’t have breast cancer. You are never cured of that.” How prophetic. So I still have my breasts, I will probably never have chemo and I’ll just run through the list of Aromatise inhibitors until they no longer work, hopefully far into my future. So no, nothing prepared me for this, but nothing will stop me from fighting it as long as I have the strength either.

What do you wish other people knew about metastatic breast cancer?

Women with metastatic breast cancer are some of the strongest, most giving people I know. Breast cancer, especially lobular, is very sneaky. One minute you’re fine or “cured” when actually you may be one circulating tumor cell away from a death sentence. Breast cancer is serious stuff, it’s not all pink ribbons. Being permanently disfigured and devastated by side effects doesn’t give you a pass either. What does “prevention” and early detection do? How many lives does it truly save? I watched 60 Minutes last night. One of the segments was about clinical trials to treat neuroblastoma by injecting modified polio virus into the center of the tumor. Where are the trials to CURE stage IV breast cancer? They have made great strides in palliative treatment, that’s a long way from a cure.

What makes you happy?

My family, including my dogs, and the courageous women I’ve gotten to know. I joined a closed Facebook breast cancer group before realizing that most of the women were just starting the fight. I did however meet a couple of women who were where I am or further along in the struggle. When I went to visit a friend in Jacksonville, Fla., we drove down to Cocoa Beach so I could meet one of the women I met in the group. She has rods in her spine and femur and a smile on her face and a big hug and an amazing kinship with other woman, I felt like I knew her forever. We will always be connected.

What advice would you give to someone who really wants to help those with metastatic breast cancer? (This either be for a friend, stranger or someone who had early stage breast cancer.)

Don’t write us off, we’re not done yet. We don’t know our expiration date, but neither do you. Don’t define us by our diagnosis, we’re the same people we always were, but maybe a little better…stronger, more compassionate, more hopeful, more contemplative. Don’t throw pink ribbons and butterflies in our face, there but for the grace of God go you. Fight for a cure, not “awareness” or “early diagnosis” — the life saved by that cure may be your own.

Mets Monday: Carolyn

Everyone, please meet my friend, Carolyn.

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When were you diagnosed and at what age?  What type of breast cancer (i.e., er+ or triple neg)?

On May 1st, 2009, I was diagnosed with stage III, er+ pr+ HER2+ (or triple positive), breast cancer at the age of 48, a few days before my youngest son turned sixteen. Due to the extreme growth of the breast tumour and other symptoms prior to the mastectomy it was speculated that I had inflammatory breast cancer but it was not noted as such.

On July 29th, 2012, at the age of 51, I was diagnosed with metastatic breast cancer (stage IV) after it was finally determined that the pain I had been in for many months was due to a breast cancer tumour destroying my C6 vertebra. This fact was missed by radiologist(s) in two CT scans until a neurologist found it while reviewing my older scans.

Inflammatory breast cancer hit my remaining breast in October, 2013. While the pathology remains triple positive, it can’t be said with certainty that it was due to metastasize or a new occurrence.

What is life like as a metser?

Difficult, joyful, exhausting, uncertain, some days more painful than others, some weeks I can’t manage the dishes or get off the couch, some days I can dance. For each person living with MBC there is a unique combination of conditions, variables, treatments, response, and progression of disease. I’ve yet to embrace the term “new normal.” There is nothing normal about life with metastatic cancer, new or otherwise.

For me, life happens in the spaces between my examinations, blood work, and IV infusions. Every three months I have CT scans to head, neck, chest and abdomen, which includes IV contrast injections. Every two months I have an echocardiogram to determine how my heart is coping with my infusions of Herceptin, which is much preferable over the many muga scans I had during my first year with that drug. Full body bone scans, MRI’s, and x-rays are intermittent.

While life happens I’m plagued with constant neck spasms which cause my head to move to the side repeatedly during the day, a distended, firm carotid artery, painful cramping in my chest, neck and esophagus, and an uncomfortable, often painful, upper spine due to spine surgery and the titanium cage, rods and screws. When I yawn, I can’t swallow or breathe well until I massage a neck cramp away.

The treatments and surgeries I’ve undergone over the last seven years have taken a toll. I have peripheral neuropathy, my extremities are numb full time. I’m prone to trip as I can’t feel my toes. My hands wear invisible gloves that I can’t remove. Fibrosis (scarring) and adhesions are also a pain in the neck, chest, ribs, back, shoulders, etc. Two of my bottom teeth are hanging on by a thread, and some of my upper middle gum came off during my neck radiation. There are other ongoing and permanent side effects as well, including cognitive decline.

My favourite moments: Reclining in my lazy boy to relieve symptoms while chatting with my youngest son and listening to his favourite music. When my two older sons and daughter-in-law come to call. Tea with my systir and niece. Laughing with my family during our visits, dinners and events. Tending and loving my eight month old grandson, a joy I didn’t think I’d experience once diagnosed with metastatic breast cancer. Walking with my friend and her dog.

When my sister, brother, sister-in-law, and I get together with our children and our Mom, breast cancer is no longer so very present in my mind. It took me almost six years to get to this point.

The most disconcerting issue I find is the uncertainty. We just don’t know how long we have left to live after a metastatic breast cancer diagnosis, when we will progress, what – or if – treatments will be available when we do, nor what type of death we can expect. We could live the median of two to three years, or we could be an outlier, that infinitesimal percentage of people who live 8, 10 years, or longer. It messes with your mind, your sleep, your resolve.

What type of misconceptions about breast cancer have you encountered?  Has anyone ever said something ignorant to you, obviously not knowing what stage 4 breast cancer is?

When you have breast cancer, you are never cured, no matter what stage you were originally diagnosed. There is no cure. If you were not diagnosed with MBC from the start, Metastatic (aka stage IV) breast cancer can become your reality at any time; a year, a few years, or many years after your original early stage diagnosis. I have learned that many people, with or without breast cancer, are not aware of this fact.

I’m continually told, “you beat it once, you’ll beat it this time!” No. I will not. Nor did I beat it the first time. It is not under my control. We manage it, while it grows in our bodies and attacks our bones, our other organs, our brains, until we can’t manage it any longer.

I find it is an innate human desire, for most people, to comfort and somewhat coddle those who are going through early stage breast cancer. While encouragement, support, and hope is most certainly warranted and necessary, I feel that the hard truths must be given as well. The misconception being, that we need to be coddled. I don’t believe we do.

One day at the grocery store a young man at the check out asked me how I was. I said that I was fine, that particular day I was telling the truth even though I was in pain. He then went on to inform me that he had a cold, his girlfriend left him, and he hated work. I don’t know what possessed me, but I asked him, are you dying? He looked a little stunned, and didn’t respond, no doubt thinking I was off my rocker. I couldn’t believe I had asked that, perhaps it was due to large pink sign above his till, and the many products with pink ribbons that surrounded me. I then explained that I had metastatic breast cancer, stage IV, and that it was terminal, it will kill me.

He said, “No one dies of breast cancer anymore, my Mom died of it, but they fixed it.”

My heart sank, for more than one reason.

How do you think the Pink Ribbon culture has harmed those with stage 4?

The Pink Ribbon culture has overwhelmed us with profit minded individuals and corporations who claim to be altruistic in their goals. I’m sure most people are quite sick of pink and zone out when pink is shoved in their face, not just during Pinktober, but all year long. I know I am. Quite sick of it. But breast cancers association with pink is ingrained in our lives and I doubt it will be going anywhere soon, and I’d like to see the focus on donations and fundraising shift almost fully towards research and education.

Mainstream media could help change direction, but I’m afraid that with the pink, comes the desire to show the happy survivor, the hope and the dreams, rather than the approximate 30% of us with breast cancer who will become metastatic and die. This attitude has been slightly changing of late, let’s hope the momentum continues.

The pink ribbon, originally salmon coloured, was introduced to create a much needed awareness of breast cancer. And while breast cancer awareness is still important in many countries, awareness of metastatic breast cancer is sorely lacking in all. The messages from these awareness campaigns have sanitized our disease, not to mention partially obliterated the reason behind the original intent of the pink ribbon movement. Pink ribbon campaigns in the marketplace are quite lucrative, a great way to bring in consumer dollars for any end product, from toiletries and pink hammers to pornography. But where are those funds going? We need donations to count, research is key.

Recently the Susan G. Komen corporation put out a new campaign using a woman with stage IV breast cancer as their highlighted warrior. I’m encouraged that they are no longer hiding stage IV in the back room, however, the message is wrong. Again.

“Don’t let breast cancer win.”

No one living with metastatic breast cancer has a choice in the matter, we aren’t losers, but breast cancer WILL kill us. The statement on Komen’s stage IV survivor ad, as well as others I’ve read in various promotions, place the blame directly at those of us living with this disease. It’s our fault if we die, we didn’t fight hard enough. That’s the message. It’s insulting, insensitive, inappropriate, and complete bullshit.

In the US the message that seems most prevalent in the pink ribbon campaigns is that early detection saves lives. The truth is, early detection does not prevent metastases. Plain and simple. If you have early stage breast cancer, it can come back, metastasize, turn your life upside down and eventually cause death. The market seems saturated with misguided information and greed, the focus has been corrupted, change is needed.

I personally stay away from anything that says “Komen.” Their message, their million dollar plus legal fights to keep “for the cure” to themselves, and the questionably high salary that the their founder takes home, are all concerning. It is my personal opinion that they are the bully foundation for what is known as the bully cancer. And why are we known as the bully cancer? Probably due to the pink ribbon culture.

There are other organizations that direct a much greater percentage of funds towards research verses awareness. The Canadian Breast Cancer Foundation is one of those organizations, and is transparent regarding fund allocation.

METAvivor‘s mission is quite clear, 100% of all donations goes towards metastatic research. Please check them out if you want more information.

Breast cancer doesn’t kill you until it metastasizes, yet stage IV seems mostly ignored within the Pink Ribbon culture. At least that’s how I felt a few years ago and I don’t feel all that differently right now. I wrote about my views in two posts, starting with Fifty Shades of Pink, back in 2013. That post will link to the next, my rant. At that time, I did not think I’d still be alive come 2015.

No amount of positive thinking is going to change the outcome of metastatic breast cancer. Research will.

What advice would you give someone who truly does want to help the breast cancer community, especially those with metastatic breast cancer?

Educate yourself, share the reality of breast cancer, share the truth of metastatic breast cancer, and don’t be afraid to talk with those of us living with MBC.

Be mindful that many of us, especially those with mets, don’t care about saving the ta-ta’s, boobie’s, the girls. Many of us don’t even have breasts. We care about saving lives. Life goes on after your breasts are amputated. We want parents to raise their children and watch their children grow, couples to enjoy the years together that they hoped for. We want to enjoy our lives and live without debilitating side effects, no matter our ages.

Many of us are insulted by the facebook games and various campaigns that go around claiming they are spreading awareness of breast cancer. One example was the popular no-bra day. I feel those games are trivializing our condition, and continuing to sexualize our disease. Every day is no-bra for some of us. This type of activity is not helpful. Those who play the games, and those who see them, are most assuredly fully aware of breast cancer.

Please visit these organizations for information on breast cancer and MBC:

Canadian Breast Cancer Foundation
Breast Cancer Consortium
BCSM (Breast Cancer Social Media) Community
LBBC (Living Beyond Breast Cancer)
MBCN (Metastatic Breast Cancer Network)
METAvivor

How can someone diagnosed with early stage breast cancer be a good ally to those with stage 4?

Once immersed in life with metastatic breast cancer I quickly became knowledgable with respect to it’s randomness and ultimate end. I then realized that when I was diagnosed and dealing with stage III breast cancer I didn’t have a clue about metastatic breast cancer. I had pamphlets, and one book that my original oncologist contributed to, which I read, though I’m not sure the very real possibility of becoming metastatic sunk in. I’m going to be just fine! I’ve had my surgery and treatments, I’m outta here!

I’d like to think that landscape is changing, people with early stage disease are better informed, personally informed, in your face informed, and not just handed a few things to read. But, it’s probably more likely that because I’m now fully immersed, I am fully aware, and because those I write and talk with are fully aware, I often assume others are as well.

We have work to do. Education is so important. The reality is hard to swallow but necessary to accept. That’s how change happens.

Keep in mind that those of us who were not diagnosed with stage IV from the start, once walked in your shoes. Living with stage IV, metastatic breast cancer, is in some ways similar to going through the various treatments for early stage breast cancer, two differences being that our treatments are forever, and our condition worsens until breast cancer kills us. There are obviously other differences, but hopefully my point makes sense.

Please remember that your breast cancer can come back at any time, I’m not trying to be a fear monger and certainly don’t wish you to live with constant dread, but I feel it’s important to remain realistic and vigilant.

Metastatic breast cancer is a widespread global killer of both sexes, young, old, and in between. In 2012, 524865 women and 3324 men died of metastatic breast cancer. Many MBC deaths go unreported as such, therefore the true numbers are higher.

If you wish to help us be heard, educate yourself about Metastatic Breast Cancer (stage IV), don’t pretend it doesn’t exist, and help us spread it’s reality.

Change is on the horizon! I might even live to see some of it. That’d be cool.

I’d like to thank Lara Huffman for allowing me this opportunity to share my views and concerns with respect to metastatic breast cancer.

You can read my story, rants, and musings at Art of Breast Cancer and if you are so inclined, follow me on Facebook, twitter, google+, and pinterest.

Breast cancer is NOT a game

I generally don’t participate in these BUT… Haha, you should not have liked or commented. Now you have to pick from one of these below and post it as your status. This is THE 2015 BREAST CANCER AWARENESS game. Don’t be a spoil sport, pick your poison from one of these and change your status, 1) Damn diarrhea 2) Just used my boobs to get out of a speeding ticket 3) How do you get rid of foot fungus 4) No toilet paper, goodbye socks. 5) I think I’m in love with someone, what should I do? 6) I’ve decided to stop wearing underwear 7) it’s confirmed, I’m going to be a Mommy/Daddy! 8)Just won $900 on a scratch card. 9) Its final, we’re moving to Mexico to be beach bums! Post with no explanations.

Oh dear goodness.  Not this bullshit again.  Why is this still a thing?   Why hasn’t this “game” been killed in a fire? You know what I want to do whenever I see this form of slactivism in my social media news feeds.

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Breast cancer is not a game.  Repeat after me: it is not a game.  It certainly is not a shitty game which tells you absolutely nothing about breast cancer.  For real, what does that game above tell you about breast cancer?  After reading that, did you learn anything about breast cancer that you didn’t know before?  I mean, it’s telling you there’s awareness going on.  What are you aware of now that you weren’t before?  If you didn’t know that breast cancer existed before coming across the 2015 BREAST CANCER AWARENESS GAME, then please give me the address of the rock you were living under.  Were you living in a land free of pink ribbons?  (Take me there!)

You know what I think whenever I see this pop up in any of my news feed: you could care less about breast cancer, and I need to unfriend you right the hell now.  I’m not even kidding.  If anyone who knows me  and what I have gone through (i.e., lumpectomy, chemo, radiation and double mastectomy) can participate in such a game and not realize how demeaning and offensive this is to anyone going through breast cancer treatment.  I never saw what I went through as some cutesy game, and I certainly don’t view my mother’s death from this disease as LOL.

Lisa Bonchek Adams, who has stage 4 breast cancer, wrote this spot-on piece entitled “Breast cancer is (still) not a Facebook game”:

The above instructions are not awareness. This is offensive. Breast cancer is not a joke, awareness does not come from sharing the color of your underwear or your marital status (the whole “tee-hee, wink-wink” attitude adds to my disgust). Even if it ended up on TV, that still would not be educating people about breast cancer they didn’t know before. All it does is show the world that lots of people are willing to post silly things as their status updates.

She also wrote:

Education underlies awareness. To even call something a game and honestly believe it’s doing anything to help any aspect of this disease is delusional.

While you’re playing games, (mostly) women are dying of metastatic breast cancer.   We have been running and racing for a cure that has not happened.   Where’s the cure?  The below infographic is proof of how little most people know, despite all this awareness.

Metastatic_Breast_Cancer__Infographic

50 FREAKING PERCENT believe that breast cancer progresses because patients either did not take the “right” treatment or preventative treatments.  Are you kidding me?   That is unacceptable.  Is this why we treat those living and dying of metastatic breast cancer as some dirty little secret nobody should talk about because most people think they brought it upon themselves?   That is so far from the truth that it should be filed under fiction.

Did you know that 30 percent of those diagnosed with early stage breast cancer have a metastatic breast cancer, i.e., the breast cancer that kills?  WAS THAT FACT RELAYED TO YOU WHILE YOU’RE PLAYING THE GAME?

Awareness does not save lives.  It doesn’t.  Despite recent media articles telling you that breast cancer rates have dropped, don’t believe the screaming headlines.

Frankly, I’m tired breast cancer being portrayed as the feel good cancer and being held up as a shining example for early detection which works sometimes or most times but not all the time and that part of the messaging is conveniently left out of every discussion about early detection. It’s buzzkill, it detracts from the message that mammograms are helping save lives. Mammograms are detecting cancer earlier and earlier thanks to the constant improvements being made in the imagine, but early detection is just that. Early Detection. Early detection is not a guarantee.

If you or anyone really want to help, tell these Facebook game players to sign this petition.   “I ask that Komen commit at least 50% of total donations to medical research and innovation rather than to awareness and education. I request all other breast cancer non-profits do the same.”  Donate to Metavivor.  Do something meaningful.

Just don’t play these games.  Please.  Can you really play a game making light of the deaths of so many?

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