5 Stages of Grief

It has only been one month since my oncologist told me that I had metastatic breast cancer, and it’s only been a little over three weeks since my hysterectomy. Honest to dog, it feels like a couple months since all this began, as if I am in a suspended state. Between Covid-19 and my medical leave of absence, I have no concept of time anymore.

During this period of time, I have definitely cycled through the different stages of grief, which I imagine is quite common.

  1. Denial
  2. Anger
  3. Bargaining
  4. Depression
  5. Acceptance

If you are like me and need a refresher as to what constitutes the 5 Stages of Grief, refer to this article on Psycom.net (link), which discusses the Kubler-Ross Model.

DENIALAvoidance, Confusion, Elation, Shock, Fear

I previously believed that denial involved only avoidance, and even thought at one point, “Well, at least I never visited the denial phase.” Boy, I was wrong.

During September, I had both a bone scan and a CT scan of my neck down to my special area. When the bone scan posted to MyChart stated that my sternum presented as potential metastatic disease, I had a delayed mental breakdown. I had an important meeting that morning, which I had to lead. I told myself that I could break down later. When it was safe, I ended up taking a half day from work because I went to a bad place.

Quite simply, I went into shock. 

I swear, I knew that very day I was going to be stage 4 and that my cancer was back. I was already back in the chemo chair in my mind. I rocked back and forth in a corner in my bedroom, whispering, “I can’t do this” over and over again. My face went numb. My arms went numb and eventually, my hands went numb. I couldn’t

My loved ones who knew I was having a panic attack about this told me, “Oh this could be the result of your trip and fall.” I wanted to believe them and go along with their theory, and I eventually agreed it could be a possibility. I never really believed it fully, but I wanted to.

The fear that I felt that day will stay with me for a very long time. It’s the type of fear that consumes you and changes you. It definitely changed me.

ANGER – Frustration, Irritation, Anxiety

Oh, I have visited this stage and camped out here for a spell. Heck, I think I have bought a house in this stage, renovated it, and redecorated. I know this phase so well. I have felt angry, and why not? I’m allowed.

I did everything I was supposed to do to ensure that I didn’t suffer the same fate as my mother. I started getting yearly mammograms at the age of 25, and sometimes, I had to go twice a year. With every mammogram, I had an ultrasound done due to having dense breast tissue (aka fibrocystic breast tissue). I had multiple fiboradenomas, and multiple biopsies.

At the age of 30, doctors found my breast cancer at stage 1b. I “caught it early.” I went through absolute hell and back for almost 2 years – a lumpectomy, chemotherapy (including anaphylactic shock), radiation, double mastectomy, and reconstruction. Still, to this day, I experience legit flashbacks if I ever get lightheaded and dizzy because that’s the sensation I felt before anaphylactic shock.

I. Did. It. All.

My oncologist threw everything but the sink at me, and I came out of that period of my life scarred and shell shocked. I even had my oncologist repeatedly tell me that the odds of it coming back were so small because of the early stage and aggressive treatment. I did everything I could to prevent this, to not end up like my mother, and it still fucking happened. This should make me angry, and it’s okay to be angry. I’m not going to pretend to be someone or something I am not.

BARGAINING – Struggling to Find Meaning, Reaching Out to Others, Telling One’s Story

Man, if I thought I could bargain my way out of this, I absolutely would. For real, if I had something I could offer in order to not have this disease, then I would do it. “Lara, you will no longer have stage 4 cancer anymore if you give up coff-” “DONE.”

In all seriousness, I don’t consider myself all that religious, so I don’t typically hold conversations with God. I didn’t, nor will I ever, ask God why this has happened to me because why not? Me having stage 4 cancer is not some horrible tragedy. It’s genetics.

It might also be that I don’t believe that God gave me cancer, or that I have been set on some journey. (Whenever I read ‘cancer journey,’ I cringe. It’s a disease, not a trek in the woods.)

While I haven’t had any “WHY GOD WHY” conversations with a higher being, I have been struggling to find meaning in all of this. One of the reasons why I love(d) running so much is that it allowed me to be someone other than a cancer patient. I got to be a runner, an athlete. I wanted to test my physical capabilities, especially after my body betrayed and failed me.

Life as a cancer mutant with a rare genetic condition means I live a different life. I have had a black and white view of what this body of mine does, and this diagnosis has me wondering if it just all grey. Maybe my body didn’t fail me? Maybe my body did what it just does, and I just have to navigate these setbacks and accomplishments more graciously?

DEPRESSION – Overwhelmed, Helplessness, Hostility, Flight

According to the American Cancer Society, 1 in 4 people with cancer suffer from major or clinical depression (source). I have made absolutely no secret that I have dealt with depression before. After treatment for my early stage breast cancer ended, I suffered and I struggled with my life. I had to reach out for help when it got really bad for me in my early 30s.

An October 2, 2013 article on MD Anderson’s website provides the following symptoms of depression:

  • Feeling sad most of the time
  • Loss of pleasure and interest in activities you used to enjoy
  • Changes in eating and sleeping habits
  • Nervousness
  • Slow physical and mental responses
  • Unexplained tiredness
  • Feeling worthless
  • Feeling guilt for no reason
  • Decreased concentration ability
  • Thoughts of death or suicide

In addition to medication, MD Anderson recommended the following activities to manage symptoms of depression: psychotherapy exercise, and stick to routine. The article explained, “Following a routine can help you maintain a feeling of accomplishment and a sense of control, both of which can be negatively affected by cancer and depression. A routine can also help push an individual to engage in activities they wouldn’t necessarily be motivated to complete.”

I did end up doing all of those suggestions, and it worked for me! Once I got help, started running and dumped a horrible boyfriend, I got my depression and anxiety under control. I really did climb out of the fog of depression and learned to really enjoy my life.

Now… *waves around* this.

I am struggling with the enormity of this disease, and what it’s taken from me. When I read the symptoms of depression listed above, I can say that I can check off six of those items. What I have feared for so long has come to be. For so long, I have been absolutely frightened that I was going to end up just like my mother, and now that it has happened, I’m just a scared 40 year old who wishes she had her Mom.

Be rest assured that I do have a good network of support to assist me as I come to terms with my new normal. If I can get back to running, even if at a much slower pace, then that will help me manage my depression. I also think being off work right now is playing a part in my mood. I enjoy a schedule and routine, and I also appreciated the ability to not think about cancer for 8 hours a day.   

ACCEPTANCE – Exploring Options, New Plan in Place, Moving On

What does it meant to achieve acceptance with a stage 4 diagnosis? I know and understand that my life is going to regularly consist of doctor’s visits, blood draws, scans, and sometimes surgeries. None of this will be easy, and I likely will regress back to the earlier phases more often than not. I truly believe that this phase will involve layers upon layers of events and truths that I need to accept, until I get to the final layer, the core: inner peace.

I have accepted that I have stage 4 breast cancer. It’s not like I have a choice, and I can somehow opt out of this. If I could, I fucking would. (Way too many people say that “cancer is a gift” and if that was true, I’d keep my receipt and return this.) This is my life now, and I can either fight my circumstances or do whatever I can to accept all of this and adapt. It’s not an act of bravery to accept my stage 4 diagnosis. It’s a necessity.

When I dig deeper, there are some hard truths that require reflection and acceptance. I accept the fact that I will die from this disease. I also accept that there is a possibility that I may not see my 50s or my 60s. I have to accept the fact that I may not even see 45, although I do hope that is not the case. This could all be out of my control.

As noted above, I want to achieve inner peace. This disease has forced me to rethink about what my priorities are and what they should be. I, for sure, want to figure out my new plan. I’m not going to figure it all out now. I can’t plan this out. I just have to let go.

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.

So Much Love

Ever since my Stage 4 diagnosis earlier this month, I have honestly felt like I have been living in a waking nightmare. How is this real? I cry a lot, and I’m often stricken by fear and anxiety whenever I think about the enormity of having metastatic cancer.

Am I going to make it to 45?

Will I be able to outlive my dogs?

Will I see all my nieces and nephews graduate?

How much time do I have left before I can no longer work?

I try my best not to let the fear overtake me but I do acknowledge that there is nothing wrong with trying to come to terms with my mortality. I have no desire to live in denial. However, I have to remind myself that I cannot afford to live whatever time I have left with one foot in the grave. That’d be the real tragedy of this disease.

Whenever these thoughts and emotions get to be too much, I am doing my best to lean into the love that I have been shown. My goodness, I have been showered with so much love and care that it has made me cry. This time, happy tears though.

To the surprise of absolutely nobody, I was a giant nerd in high school and had maybe 3 or 4 friends. My hair always looked like a frizzy mess, and I wore glasses covering up half of my face. (Why weren’t glasses trendy when I was in school? Whhhhhyyyyyy?) My stepsister, who is my age, was the popular one, and I absolutely resented that if anybody knew who I was, I was known as only her stepsister.

I got bullied a lot, and after awhile, I believed the bad things said about me. I was more inclined to believe the bad and second-guess the good. Sad thing is, I still do it. My instinct whenever I receive a compliment is either to: a.) make a joke, or b.) completely ignore it because acknowledging it makes me so uncomfortable.

If you compliment me or show me affection, IT TRIGGERS SOME SORT OF FIGHT OR FLIGHT RESPONSE IN ME.

This trait of mine might have been quirky before my cancer recurrence, but now I am finally realizing that these lies I have told myself are apparently not true. Who would have thunk? Did it take a metastatic cancer diagnosis to finally snap me out of this “haha, I’m a nerd and nobody notices me” mindset?

Don’t get me wrong – I still do not like attention, and I will not be seeking any spotlight. I don’t desire fame, and this will not change. Once I recover from surgery and adjust to my new normal, my focus will be on researching my own disease and advocating for research.

Friends, loved ones, coworkers have expressed such raw, genuine emotion to my news. Tears have been shed, and I have been on the receiving end of so much love and kindness. I have been drowning in my own fear and sorrow, and I have been reminded dozens of times over that I am loved. Friends and loved ones have shown up to take me to appointments, sent me meals, money, and have contributed to my Huffman Rules fundraiser.

I am so unbelievably grateful, and words cannot adequately express how thankful I have been. All these years where I have believed I have been flying under the radar – turns out, I’ve been popping up on radars here and there. Oh no, my cover is blown!

From the bottom of my icy cold heart, thank you thank you thank you thank you. I, of course, hope that once I heal from the surgery and have been on a steady endocrine therapy, I can get back to some semblance of normal. I want to go back to work. I definitely now want to go on vacations that I have been putting off. I want my siblings’ kids to know without a doubt how much I love them.

I have a lot to do.

Get Up Swinging, or just get up?

On Friday, I went into the hospital for my complete hysterectomy, which marks my umpteenth surgery. Honest to dog, I have lost count how many surgeries I have had. I know I am in the double digits, but I would have to put pen to paper to figure out just how many times I have had surgery. My friend Amy and I joke about how many times we’ve both had surgeries. I feel like I should have a punch card, and she thinks we should have a hospital wing named after us.

The gyn oncologist was able to complete the surgery laparoscopically, and now I have four new stab, er, surgery wounds. My abdomen honestly looks like an abstract work of art. Instead of brush strokes, it’s just scars, radiation burn, and stretch marks.

What message do you believe the artist is trying to convey?

Hmm, the message I’m receiving is surgery. Just a lot of surgery.

The gyn oncologist didn’t encounter any complications, and I got released after spending one sleepless night in the hospital. I can never ever ever sleep when I’m in the hospital. I ended up texting a friend on the West coast around 1:30 am in the morning, and then watching episodes of American Greed on CNBC.

I am now home recovering. I am not allowed to drive for two weeks, and I cannot lift anything more than 10 lbs for six weeks. My boyfriend has been taking great care of me, even though I know I am driving him crazy. I have a hard time relaxing and asking for help, so I putter around my 1st floor a lot instead of just laying down and relaxing.

I know sooner than later, I am going to start feeling the side effects of this surgery: mood changes, hot flashes, and fogginess. I am grateful I have ability to take time off work to recover from this surgery and adjust to this new normal for me. My managers at work have been absolute freaking fantastic toward me and what I am up against. Their support has taken a giant load off my shoulders, and they have made it crystal clear that my first priority should only be my health and recovery.

This week, I should be completing radiation simulation. What is radiation simulation, you may ask?

Positioning is extremely important in radiation therapy. Your body will be positioned carefully in order to get the best radiation treatment. You will be in the same position during every treatment, and you will have to remain still. To stabilize your position, you will probably be asked to lie in a special “immobilization device” on the treatment table.

There are different kinds of immobilization devices. Some look like a cradle; others look like a foam box that is shaped to your form. You will not be trapped or closed in. You may be asked to lie down in a custom-shaped mold that just touches your back and sides; or your treatment center may use a “breast board” that places your head, arm, and hand in a fixed position. Unfortunately, no padding can be used on the treatment table or positioning devices because that makes your treatment position less precise

https://www.breastcancer.org/treatment/radiation/types/ext/expect/simulation

Also this week, I have an appointment with my medical oncologist to discuss what AIs I will begin taking. Now that I have had my hysterectomy, this should make the discussion on what I can take a little easier. With AIs (aka Aromatase Inhibitors, or endocrine therapy), I am definitely going to experience side effects and this will require an adjustment for me.

None of this is going to be easy, and there will be tears and frustration. I cannot promise I am going to be the same Lara that I was before, but I will reach out for help when I am struggling. I may get angry and mourn the life that I used to have. It’s okay to not know what to say to me or how to act around me. I don’t know what to say or how to act either. This is new territory. I am not going to “beat” this, and I will be in treatment for cancer until the day I die. I am not a cancer survivor. Now, I just want to be a thriver.

I may not get up swinging, but I will do whatever I can just to get up.

10 Years, 10 Days

September 22 marked 10 years since I learned that I had Stage 1b breast cancer. 10 days after that, I found out that my breast cancer has returned, but this time, I am stage 4. I have metastatic breast cancer, which means it’s treatable, not curable. I will be in treatment for the rest of my life, however long that may be.

Let’s back up a couple months. In early August, I tripped and fell during a trail run, and I body-slammed myself into the ground. Not only that, I was wearing a hydration vest with two detachable water bottles located at each boob. One second I was running and the next second, I found myself face first on the ground, feeling like I had the wind knocked out of me times 100.

My boyfriend ended up taking me to the ER, where the doctor ultimately diagnosed me with a chest wall contusion and a concussion. The chest X-ray and spinal X-ray didn’t show anything concerning.

In early September, I had routine bloodwork ordered by my oncologist done. He had been monitoring my rising CA 15-3, which kept slowly rising over the previous year or so. Dr. C didn’t seem concerned about it, but I certainly was. Dr. C knows cancer, but I know Lara. To ease my concern, Dr. C told me that he would normally just re-test the tumor markers in 3 months and see, but he knew I was very concerned. He said that he would order a bone scan and a CT scan to put my worry to rest. (Haha.)

Both scans showed potential metastatic disease in my sternum, and the CT scan showed a potential lesion in my T11. When I learned this, I did not take the news well at all, and why should I? I had the worst panic attack of my adult life and had to take off work for the rest of the afternoon. I went numb in my face, my abdomen, and I lost feeling in my hands. I knew that day this was it.

My loved ones repeatedly said, “No, no, no. These scans are showing the result of your fall.” Fair argument, and at times, I did want to believe it. Ultimately, deep down, I knew this was stage 4 due to the fact my tumor markers were high. I have always known this was going to happen because this is what my body does.

I had a bone biopsy of my sternum, and not going to lie, that was one of the most horrendous procedures I have had done. When the radiologist inserted the needle into my sternum to numb it, I screamed in pain. While screaming, I heard them say, “Be still!” Hahaha, fuck you. I’m doing my best.

Fast forward to present day, it appears that my cancer is contained in the sternum and has not traveled to any other organ. If that is indeed true, then that is a big WIN for me. (I learned a new term – it’s called oligo.) It means we can radiate the cancer in my sternum to high hell, and then I start taking an AI. No need for chemo for bone mets. My other “good” news is that the metastatic breast cancer is estrogen and progesterone receptive and Her2 negative. That means I have a lot of options in AIs. The goal is to get the cancer back to zero and keep it there for as long as possible with AIs.

Am I devastated? Oh God, yes. I am gutted. I cry a lot. This is my literal nightmare come true. My mom was also diagnosed with Stage 4 breast cancer when she was 40, and died before she turned 41. How can this not mess with my head? I am my mother’s daughter.

I have to take all this minute by minute, or hour by hour, or day by day. I have a great support system here to throw me a life preserver when I feel like I am absolutely drowning. My team of doctors does include a psychiatrist to help me deal with the emotional bitch-slapping that stage 4 cancer brings.

I guess this means Get Up Swinging is back. Instead of making one billion phone calls after each update, I just plan on updating this. I need to get back to my introvert ways, and keep my inner circle small. All these phone calls have left me just absolutely drained and exhausted. I understand people who care about me want to check in with me and make sure I’m okay, and I am very appreciative. I also want to eventually transition to an easier way to keep anyone who cares apprised of my health.

Plus, this will be the best way to document how I keep cycling through the 5 stages of grief, and vent about cancer-related topics that piss me off (i.e., inspiration porn, or calling cancer a battle). Also, OF COURSE I WOULD BE DIAGNOSED WITH STAGE 4 BREAST CANCER DURING BREAST CANCER AWARENESS MONTH. Argh. It’s like pouring salt in a large gaping wound.

So… stay tuned?

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: Susanne

For today’s Mets Monday, let me introduce you to Susanne.  This is her Facebook page and her GoFundMe page.

When were you diagnosed (initially and then at stage 4, that is, if you were not stage 4 off the bat) and at what age?  What type of breast cancer (i.e., er+ or triple neg)?

I got the call that the biopsy came back positive for cancer on November 19, 2013. A couple weeks later, a PET scan and a second biopsy confirmed it was already metastatic to the liver. I’m ER/PR+, Her2-, invasive ductal carcinoma.

I was 39 years old.

What is life like as a metser? 

Not easy. Coping with this for me is a weird dichotomy of knowing I’m going to die, and hoping I’m going to live. I wrote a blog post a while back comparing it to a Hail Mary pass in a football game. You’ve got four seconds left on the clock, and you know you’re going to lose the game, but you still keep your butt parked on the bleachers because those Hail Mary passes can and do sometimes happen in those last few seconds.

I spend time getting things ready for my funeral, arranging a pre-pay insurance, writing the obituary, figuring out what hospice I want to use, that sort of thing. It feels like the more I plan and get out of the way, the freer I am to live my life and not worry about the details. I plan for my death so I can live.

I don’t want to die. Last night I had a sobbing, screaming panic about reality. I don’t want to die. I want to be able to stay here forever, I want to grow old with my wife, I want to see the first humans on Mars, I want to be a little old lady in a nursing home someday weirding out the CNAs and decorating my room with print outs of cat macros. I don’t want to die. It’s not fair. I have so much I wanted to do, so much I still want to do. It’s not fair.


Would you say the general public as a whole knows a lot about breast cancer?

No. They know it exists, but not much beyond that. There is awareness, but pink has normalized breast cancer to the extent that we no longer think of the dying. People are aware that breast cancer is a thing that happens, but nothing more. It’s assumed that people don’t die from breast cancer anymore, that there’s a cure now, it’s just an easy rite of passage of womanhood and it’s nothing to worry about anymore.

It’s not even a chronic, treatable disease. It’s killing us and it’s not slowed down in decades. It’s not a pink, pretty, sexy, easy disease with a free boob job. We’re dying. And the general public doesn’t really know nor care.

 What does “breast cancer awareness” mean to you?

It means making the public aware that pink ribbons don’t save lives, early detection doesn’t “cure” breast cancer, and that if you have breast cancer, you’re at a risk of metastasis, period. It’s not a disease that strikes older women; young women can get it too. It’s not even a woman’s disease, men get breast cancer, and the general public isn’t aware of this. There’s awareness of a generic concept of breast cancer, what we need now is awareness of the reality of this disease. That’s seriously lacking.


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?

I’ve been told that breast cancer is a ‘rite of passage’. Someone expressed relief when they found out I had breast cancer, because it’s one of the “good ones”. I was told “your hair’s growing back, though. That’s good, right?” when I was trying to explain that I was never going to be out of treatment for metastatic breast cancer.

What makes you happy?

My wife, primarily. This has been incredibly hard on her, and we have so many regrets and fears and anger about having our years together robbed by this. She is everything to me. I fight so hard against this disease because I want to stay with her forever.

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

Pay attention to where the money goes. Don’t assume that because it’s a pink ribbon, it helps anyone. There’s a multi-million dollar merchandising industry being built on the backs of the dead and the dying. Be aware of how little goes to metastatic research. Be aware that you’re not “in the clear” at any magical point. A cure for metastasis is a cure for you too. Be aware that breast cancer is being normalized and sexualized and turned into a profit machine. You are worth more than your breasts. Be aware that mammograms are not perfect. For younger women, they’re often ineffectual due to the density of breast tissue. Even for older women, they might not always show up on scans.

We deserve more, we deserve better treatment, better awareness, better research into a valid, viable cure which will benefit all stages. The death rate from metastasis has not changed over the last 40 years. Early detection isn’t saving lives. We need funding into research, and we need people to be more aware of what their dollars support.

But perhaps the most important thing is to let us have our voice. Don’t hush us up or put us in the corner and give us bare bones acknowledgment because we’re your worst nightmare. We’re dying. Don’t begrudge us our remaining time to have a voice to speak out against this disease. Don’t tell us we’re wrong when we point out the stats and the funding. Don’t defend those who want us to be quiet. You might find yourself walking in our shoes. If you don’t want to be where we are, let us try to make history and give us enough awareness for a shot at finding a cure.

We’ll be quiet enough when we’re dead.

Please visit METAvivor and Live from Stage IV for more information.