October 30: A Recap of the Month

There are a lot of good blog entries out there about metastatic breast cancer, but by far one of my favorites is What Have We Learned About Metastatic Breast Cancer, Charlie Brown? It's comprehensive and witty, and one line especially stands out to me.

When I was first diagnosed with metastatic breast cancer, I wanted to set the world on fire.

This is where I am right now, trying to set the world on fire with advocacy and awareness. I hope I never lose my passion for speaking out and trying to get more funding for metastatic research. I hope that is my legacy, to set the world on fire.

So what have we learned this month?

30% of early stage breast cancers go on to become metastatic. Even Stage 0 is at risk. Once there is cancer in your body, you are at risk of developing metastasis. And there is no cure for metastatic breast cancer. Only treatments in hopes of prolonging your life. An additional 10% more are already metastatic from the time they're diagnosed. That means 40% of breast cancers are metastatic.

155,000 people in the USA are living with metastatic disease.  The US cancer registry does NOT track breast cancer recurrence so there are no reliable numbers for how many new cases of metastasis get diagnosed each year.

40,000 people die from metastatic breast cancer in the USA annually. This number has not changed over the years. Despite all the early detection and awareness, the mortality rate of breast cancer has remained stable. We are no closer to a cure than we were 40 years ago.

Only 2% of the funding for breast cancer goes to metastatic research. All the rest goes to early detection and awareness programs, and of course, company overheads and CEO pockets. If you want to make a difference with metastatic research, be sure to donate to a company where 100% of the donations go to metastatic breast cancer, like METAvivor.

The average length of survival for people diagnosed with metastatic breast cancer is 3 years.

The primary locations of breast cancer metastasis are: brain, bones, liver, lungs.

Early detection does not guarantee a cure. Metastatic breast cancer can occur 5, 10 or 15 years after a person's original diagnosis and successful treatment.

Women as young as 11 years of age, as well as men, can be diagnosed with metastatic breast cancer. There is no such thing as 'too young' or 'too male'.

Each woman and her prognosis is different. There are more than 18 different sub-types of breast cancer known to doctors, and each of those forms can have variations in things like hormone receptors and genetic factors.

Only 5% of women with breast cancer test positive for the BRCA 1 or 2 gene mutation.

Treatment for metastatic breast cancer is lifelong and focuses on control of the disease and quality of life.

For more information, please read 13 Facts Everyone Should Know About Metastatic Breast Cancer and also the 2013 MBC Fact a Day - 31 Days in October.

Help us out in our fight for research and better treatments. Donate to METAvivor.

October 29: Dumb Stuff People Say to People With Metastatic Breast Cancer

Today, I thought I'd share one of my favorite videos. It's a collection of dumb and broken shit people have said to people with Metastatic Breast Cancer. You might recognize some of them from the Bingo game card featured on October 8th. Some are just pinkwashed ignorance, while others are jaw-droppingly callous.

One of them that irks me the most is the implication that if we have metastatic breast cancer, then we must not have been taking good care of ourselves. We must not have been exercising enough, eating the right foods, drinking the right beverages, doing the right thing.

Have you heard yet about the Bald Ballerina?

At age 23, Maggie Kudirka, a dancer at Joffrey Ballet School, was diagnosed in June of 2014 with breast cancer. But not just breast cancer. She was diagnosed right out the gate with Metastatic Breast Cancer. And she is a ballerina, and has been since the age of four.

In case you're not fully aware of how much physical training and work goes into being a ballerina, this Under Armour advert highlights what a grueling sport it is. Look at the shape she's in. That's normal for a ballerina. If someone so young and so fit could get metastatic breast cancer, what does that say about the rest of us? It's not our fault.

We might still have our hair. We might "look fine". We might even be able to continue working. But that doesn't make what we have any less serious. We have Stage IV Metastatic Breast Cancer. There is no cure. There is no point where we are "finished" with treatment if we want to continue to live a bit longer. This is as serious as it gets. We might seem fine but we will never BE fine. This is our new reality.

And no, you can't have my flat-screen TV when I die. What is wrong with you?

October 20: Obituaries, a MBC reality

In just one day shy of a month, I'll be one year out from my cancer diagnosis. I was metastatic from the start. It's been a rough journey, breaking out of the pinkwashed world and coming to terms with what Stage IV really means.

One of the things I've done is find a free funeral planning website, My Wonderful Life. I've assigned an Angel, someone to release the details of what I've planned to loved ones, and I've also set up a pre-pay arrangement for my funeral. I've written my obituary, and decided that I want a visitation prior to the funeral, and I want to be cremated. My ashes will stay with Jen, and will be interred with hers once she passes.

I'd really like my ashes to be kept in a dragon-themed urn, such as this stunning beauty. The cost of it will come out of my funeral expenses.

This is the reality of Metastatic Breast Cancer. There's no Pink Cure here. And 40% of the people with breast cancer have Metastatic Breast Cancer, which is responsible for 100% of the breast cancer-related deaths. This is why I advocate so hard to keep Stage IV from being ignored. Even people with earlier-stage Breast Cancer are blinded by the pinkwashing and don't realize they're at risk of developing metastasis, regardless of stage and treatment. Stage IV needs more. We need more awareness, more funding, more research. To drive the point home, that those with a metastatic diagnosis are terminal, we have to start actively thinking about things like wills and funerals, and sometimes at a young age, I'll share my obituary.  Obviously it will be edited as time passes and things change, but this is how it is today, at this moment in time.

Susanne Kraus-Dahlgren
"She's a traveler, she's a gypsy, passing through and moving on."
Born April 23, 1974 in Ft Wayne, Ind to her amazing and awesome parents, Michael and Carolyn, who survive her, she moved to TX at age 16, and then later to her final home of Lincoln, Neb, which she shared with her partner and wife of $Years, Jennifer Kraus-Dahlgren, and their furbabies, Josh, Loki, and George Bailey.
She is also survived by her grandmother, Marybelle Timbrook of OH, four aunts, two uncles, their spouses, and dozens of cousins, and five heart-sisters: Rebecca Ford of TX, Kristin Davis of NC, Caity Silke of CA, Laura Schultz of NH, and Sara Lang of TX.
She is preceded in death by three grandparents, Clifford and June Kraus of IN, and Basil Timbrook of OH, and by numerous furbabies who have happily welcomed her to her new home.
In her too-short journey on this earth, she was an actress, a writer, a knitter, a geek, a horseback rider, and a nurse. A daughter, a lover, a friend, a sister, and family to many more than the bonds of genetics define.
"If nothing we do matters, then all that matters is what we do."

I want the obit printed in three newspapers.  The Lincoln Journal-Star, the Fort Wayne Journal-Gazette, and the Bryan-College Station Eagle.

I want memorial donations in my name to go to any of these beneficiaries:
 http://www.allfelinehospital.com/
http://www.metavivior.org/
http://www.youngsurvival.org/
http://wishuponawedding.org/


This is the reality of Metastatic Breast Cancer. I'm 40 years old and I have an obituary written. Hopefully it won't need to be published for a long time to come, but I know it will be published. Where's the Pink Hope and Cure for me? It doesn't exist.

If this month has taught you anything about the realities of MBC, please consider making a donation to METAvivor instead of buying pink ribbon merchandise.

October 17: How I Reacted to My Diagnosis

On my Facebook, I opened myself up to questions for entry fodder for this month. Here's one of them.

What was it like when you first heard your Metastatic diagnosis. How did you cope? First thoughts? First days? First month? Now? -Beth

 When I first heard the words Stage IV, it wasn't entirely a surprise, but for the wrong reasons. My primary mass was 6 centimeters in size, and I thought that size was related to stage. It can relate to stage sometimes, but not always. I assumed because the mass was big, that meant it would be Stage IV. I didn't fully understand what that meant.

I thought I was still able to be cured. I thought I'd be fine, that I just had to power through harsher treatment, more chemo, more surgery than an earlier-stage patient might. You could say that I coped with denial. I wasn't dying. That couldn't be true. I would be just fine, just you wait and see.

I argued with my oncologist. I told him to mark my words, I'd be cancer-free, I was strong enough to beat this. Bless him, he didn't argue back. He knew I'd come around sooner or later, and that it wasn't the time or place to push the issue.

I walked a very fine between calm and screaming despair, like walking a tightrope. I put on the bravest front I could muster in an effort to convince myself that I would be okay. Whenever my thoughts started to run wild on me, I brought them back under control by reciting the Litany Against Fear from Frank Herbert's Dune.

"I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain."

Jen and I at the salon when we got our heads shaved together.

 I fully and wholeheartedly believed, thanks to the pinkwashing, that I just had to be strong enough, brave enough, tough enough to fight this and beat this thing, and I would be fine.

Coming to the realization that wasn't the case was harder.

I was still convinced I'd be fine a month later, but I was starting to think of it more as a simple, chronic, and wholly manageable disease I'd just be on medications for for the rest of my life. I was starting to achieve some inner zen though, around the time my hair started falling out and I went in to have my head shaved.

Coming to terms with my own mortality, I wrote about that back in the early days of this blog.

I've come to realize that this is essentially a chronic illness. There is no cure. I will have cancer for the rest of my life and while I want that rest of my life to be a long, long time, I'm aware that it might not be, despite everything I do.

That's kinda fucking terrifying to realize.

I've been adapting to this understanding in bits and pieces. I've skirted around and cast indirect glances, like watching a Medusa through the reflection of a shield, by coming up with a soundtrack for my funeral, and I've looked it straight on without really thinking about it and wrote my own obit. I had to ease into the acceptance of this possibility the way you ease into a too-cold pool, or a too-warm hot tub. Inch by cringing inch.

But like the pool or hot tub, once you're submerged, it no longer feels as bad as it did going in. Sometimes it's even a comfortable feeling.

I think the imagery of Medusa and the shield is the best way to describe what it was like for me to face my own mortality. I couldn't look it directly on, or I'd turn to stone. I had to look at an indirect reflection to be able to face it. Once I was able to face it, I slowly became accustomed to it.  As I became accustomed to it, it lost its power to turn me into stone. Now, I can look at it straight on and say "I'm terminal" without a rush of panic or stammering excuses.

I'm doing fine now, better than fine, actually. According to my oncologist, I'm doing great. I do attribute some of that to my ability to achieve that calm zen I felt during my time in chemotherapy, staying calm and chill and upbeat. Positive thinking won't cure my cancer but it did make the side effects less horrible overall.

October 16: Ways To Help

So your friend or loved one has been diagnosed with Metastatic Breast Cancer. What can you do to help?

1) Don't tell them to be brave. Chances are, they're putting on a braver face than you can imagine because they don't want to worry you. Actually, go read (or re-read) the four-part entry on what not to say (Oct 8-11, 2014)

2) Ask what you can do to help... and follow through. If they answer and it's in your abilities, you made the offer. Nothing stinks more than being offered help, and having that help disappear when specifics come up.

3) Offer to do housework. Especially if they're undergoing radiation or chemotherapy, they might want to be able to clean the kitchen or do laundry, but lack the energy.

4) Make up casseroles that freeze and reheat well. First, be sure to account for their personal tastes and any weird taste glitches that treatment has brought up. For the last few rounds of my chemotherapy, I could not stand the taste of meat, especially chicken and seafood.

5) Find out if there's any supply they're going through quickly, and pick up some extra and surprises them. I went through boxes of tissue rapidly while on chemo due to increased sinus drainage and nosebleeds. I also started going through bottles of RealLemon juice, added to my water, since I could no longer stand the taste of plain water. I also snacked on dried, sweetened ginger candy to keep the nausea at bay.

6) Offer to drive them to and from chemotherapy and radiation appointments. If they need a ride or have been driving themselves, offer to help share the burden so they can rest on the way home. Plus, the company during infusion can be nice to have.

7) If they have a caretaker, ask the caretaker what you can do to help them. Sometimes the best way to help a cancer patient is to help the people already helping them.

8) Let them talk to you about what they're feeling. If they're having a bad day, let them vent without panicking that they're giving up. Avoid giving them empty platitudes, just give them an ear to listen and a shoulder to cry on.

9) Spend time with them. If they're currently in active treatment, they might not be up for going out and doing very much. Coming over and watching a movie with them and just spending time with them can be priceless, especially with how little time we might have left.

10) Offer to accompany them to doctor appointments and take notes. It's hard to listen and remember everything that's said, especially with chemobrain being a thing. It's difficult to pay attention and take notes while interacting with the doctor, and having an impartial pair of ears listening can be a real boon.

For even more ideas, check out 44 Ways to Make the Day of Someone With Cancer by Elana Miller MD.

October 11: What Not to Say - Part 4

Welcome to the fourth and final installment of what not to say to a person with metastatic breast cancer, a series of posts spawned from a Bingo card (featured on October 8th's post). One last time, the intent is not to shame anyone who's said these things with well-meaning intentions, but to educate. Even I have been guilty of saying them about my own metastasis, due to how pervasive pinkwashing is in our society.

"When do you finish treatment?"

This is the question I think everyone with mets hates the most, because answering it forces us to look at the unvarnished truth. The answer is never... unless we're entering hospice. We will be in treatment of some sort for our cancer for the rest of our lives until we die from it. Scans, doctor appointments, pills, IV infusions, injections, blood transfusions, that's our new normal. There is no finish line to cross in this race. We will never be done with treatment. When we stop treatment, it means our time has come. So no, we hate this question. 


"What's your prognosis?"

What do you mean by that? Stage IV Breast Cancer is terminal. Our ultimate prognosis is that this disease will kill us. We can be doing fine at the moment, with stable disease and no progression, but that doesn't change the fact that there is no cure, and  treatment will continue as long as our bodies can tolerate it. Right now, at this very moment I'm writing this, if someone were to ask my oncologist how I'm doing, his reply would be "Great!" I've had a wonderful response to chemotherapy and anti-hormonal medication, and we hope that I'll continue to have this great response for a long time to come. But the fact remains that three years is still the average life span of someone diagnosed with metastatic breast cancer. That's my prognosis.


"So-and-so had this and she's fine."

Well, good for her. It's not unheard of for women with metastatic breast cancer to live five, ten, fifteen, even twenty years past the date of diagnosis. But each case is unique. Each cancer is different. There can be two people diagnosed with the same kind of cancer in the same stage on the same day, and one can thrive while the other passes away. There are so many variable factors that each case is unique to each patient. Looking at other people's progress or lack thereof does not tell you anything about your own prognosis. You can look at averages, but there's no way to know where at on the scale you'll fall. Some women thrive for years, and others are taken from us far too soon. We're not a cookie-cut carbon copy of each other. We all respond to the disease and treatment differently

And please, don't mention that so-and-so had this and she died. We know people die, we don't like to be reminded of it.

----

And that concludes the four-part presentation of what not to say to someone with metastatic breast cancer. I hope I haven't offended and I do hope I have educated. As always, if you wish to err on the side of caution, consider how you would feel in the other person's shoes if you were asked such a question. Unless you know questions are invited, people have a right to keep their medical health private.

Part One
Part Two
Part Three

October 10: What Not to Say - Part 3

Welcome to day three of What Not to Say to a person with Metastatic Breast Cancer. As I've said, this is not to guilt anyone who's said these things with good intentions, but to educate. Even I was saying them to myself back when I still had the pink blinders on.

"Why can't they just do surgery?"

It seems to boggle people when they find out I've not had a mastectomy and am not planning to do so. Wouldn't cutting the cancer out get rid of the cancer? Not in the case of Stage IV. The cancer is already spreading through the circulatory and lymphatic systems, and just because it doesn't show up anywhere else only means that it's not big enough there yet to detect. Cutting out bits and parts of the body as the cancer rears its head wouldn't actually accomplish anything in curing the cancer or getting it under control, but instead put the body through unnecessary additional strain and raise the risks of infection or organ failure. There are studies that indicate removing the primary mass can actually help trigger the growth of additional metastasis, and overall does nothing to improve the chances of survival.


"How can it be breast cancer if it's in your liver/lungs/bone/brain/etc?"

This is what Stage IV is. The breast cancer cells break away from the main tumor and are dispersed through the body, looking for somewhere else to take root. The four most common sites for breast cancer metastasis are the brain, the bones, the lungs, and the liver. It is not limited to those four places, but those are by far the most common, and it's likewise not unusual to have metastasis in more than one location. Prognosis can depend on where the cancer takes root; bone metastasis is thought to be the easiest to bring to a stable state for a longer stretch of time, but it comes with it the side effect of weakened bones and an increased risk for fractures and joint replacement surgeries.

***
Part One
Part Two
Part Four

October 6: Milestones

Mothers often think about seeing their child's "firsts" - First day of first grade, prom, graduation, wedding. For many, these are contemplated with the outlook that it's a given they'll be there.

Many young women with metastatic disease are mothers. For them, these milestones come with an extra prayer. They'd like to live long enough to see them. To see their young child start their first day of first grade, starting high school, going to a prom, off to college, getting married. For many of them, the reality is that they won't be able to live to see these things.

The ones they do experience, they're all the more precious for it.

What would it be like to have to live your life knowing that you probably won't survive long enough to see your little child start high school, let alone graduate or go to college? Knowing that this beast will rob you of these experiences, these milestones?

That's what it's like to live with Metastatic Breast Cancer. Even if you're stable now, each holiday, each birthday, it might be the last.

I recall one woman in a Facebook group for metastatic breast cancer. She went on a camping holiday with her husband and children to build memories for them over Mother's Day weekend, and during this time, she posts to the group with reports of feeling worse, with her eyes turning yellow. A week later, we learned that we lost her. That's how quickly things can change.

Each moment is precious, borrowed against the threat of the beast. We live knowing full well that we're dying.

It's not romantic. It's not Hollywood. It's not something beautiful and poignant and touching. It's rough and it's painful and it's unfair.

We are living on borrowed time, and there's too many milestones to live. Too many that are being robbed from us for lack of treatment. Effective treatment that can keep this beast at bay longer. Cancer is a living thing, it grows, and it adapts. Treatments which worked for years can suddenly become no longer effective, and there is progression. In the end, there is always progression. And there's not enough research for more treatments, more options when we run out of what's currently at hand. We turn to clinical trials and pray we don't get a placebo, pray that it works, in an effort to make it to the next milestone.

That's the reality of metastatic breast cancer.

We need to make some noise

Early-stage breast cancer and metastatic breast cancer are two different beasts. Treatment and information between the two can vary greatly. The American Cancer Society has a pamphlet for breast cancer, just one. And it only relates to early-stage.

When I was in for my mammogram - my first one, after I already had BC under the age of 40 - there was only information about early stage, early detection. It's hard to find anything about metastatic breast cancer anywhere unless the site is about metastatic breast cancer to start.

When general cancer sites do have something that mentions metastatic breast cancer, it's usually very bare-bones. Not a whole lot of detail, compared to early stage.

Metastatic breast cancer gets ignored in research and funding, and that's the stage that kills people.

40% of people with breast cancer are metastatic. That number is too damn high.

10% of them were metastatic from the time of diagnosis, like me.

30% of them were treated for early stage breast cancer, usually quite aggressively to boot. Mastectomy,  radiation, chemotherapy, hormone drugs. And they still develop metastasis.

Hiding from the metastatic beast won't make it go away. Pretending it's not an issue won't keep people safe. We need to make noise, like the people with AIDS back in the '80s who were fighting to get research for treatment and maybe a cure. I don't know how to do that, though. If I did, I'd be doing it.

All I know how to do is write. So I have this blog, and I'm working on a book, a memoir, to try to get the word out. If anyone has any more ideas, please feel free to share them.

We've got to be the squeaky wheel if we want the grease.

Advocacy

The final stage, it lies forgotten,
Drowned out in a world made of pink.
Breast cancer is cured, they say,
And it applies to even us, they think.

This is not true, the fight and hope,
We fight among the best.
But the cancer has its foothold
Far beyond our breast.

It matters not the gender
Or the age of who is claimed.
Religion, race, creed, or country,
It takes us all the same.

We see a finer beauty left to live
And, too, we keenly feel
The loss of moments now denied-
A reality too real.

To honor our fallen brethren,
We must raise a hue and cry,
And bring awareness for the Fourth
Before our own time comes to die.

Metastatic cancer is oft ignored
In favor of those who survive.
We beg researchers to forget us not,
For we too are still alive.

The ones who found theirs early,
Metastasis strikes even they.
Thirty percent cannot run nor hide,
And struggle to keep it at bay.

Ten percent more are metastatic
From the time they're initially seen.
For them, the hope of cancer-free
Has died before they can dream.

Of all the funding raised in the pink
A mere two percent goes toward mets.
The rest goes to CEOs and overheads,
And programs for early detect.

Thirty percent for the thirty
Is all that we ask, nothing more.
It's time to acknowledge metastatic disease
And to stop ignoring Stage IV.

The Silent Beast

It lurks within,
The silent beast,
It travels through our veins.
It moves about
From cell to cell,
And brings fatigue and pain.
There are ways
To slow it down,
To halt it in its spread;
But only brief,
This slight reprieve,
From the beast that wants us dead.
There's different kinds,
The common lump;
A painful, reddish rash;
It can start small,
And spread around,
An indistinct thick mass.
There's surgery,
There's medicine,
There's radioactive rays.
There's hope and prayer
That this works
So we might see more days.
There is no cure,
No surefast fix,
And all our days we borrow
From this beast-
Metastatic cancer-
Which robs us of tomorrow.

"I'm getting very tired of this cancer of yours"

(Originally posted in the Young Survival Coalition Metastatic forum 18 July, 2014)

So that's making the rounds on Facebook. It's a very important concept, as my partner suffers from mental illness (and most of us with cancer have developed depression or anxiety) and mental illnesses are just as real and difficult as visible physical ailments.

But the top one had me thinking. That's something I've seen others with mets complain about hearing, how friends and families get tired of dealing with the never-ending reality of cancer, especially when we're in a place of stability. We have fatigue, physical issues, aches and pains that come from cancer, and we might be surviving for years with this.

My mother in law doesn't think I'm dying, just because I'm stable at the moment and I'm in relatively good health otherwise. I'm not actively dying, but only because I'm in treatment. I'm still stage 4. People get tired of the New Normal of stage 4 cancer, and start complaining about this little cancer problem of ours, like we can't be surviving with it, like a chronic condition. It's like the only acceptable options for cancer are 1) getting cured or 2) actively dying.

I can't go back to work, if I do, I lose my medicaid coverage which is paying for the scans and drugs that are keeping me monitored and stable. This is not going to end. The only way I'm getting off Zoladex and Femara is when they stop working. Not if. When.

I woke up today and about an hour later I had to stop and think because for a few scary moments, I was so sure I had brain mets. I dreamt that the scans showed brain mets. It wasn't a nightmare, I didn't wake up screaming or crying, It just faded out in a normal sleep cycle like a normal, natural thing and it was so easily incorporated into this new normal that I had to stop and actively remember that it never happened. And even after that, there was still the lingering "I have brain mets now" feeling. I don't have any symptoms to suggest it, it was just something in a dream, but that's the kind of normal my life is.

I have The Cancer. I will never stop having The Cancer. Even if I get NED, I will have The Cancer. It just means it's not actively killing me at the moment. It's never going to go away. And my life has become something where I can dream I have new mets and it just feels so normal and easily absorbed into my life that it doesn't strike me as odd.

We're tired of this cancer of ours too. We don't want it to be our reality. So a hearty fuck you to the families and friends who tell us that they're getting very tired of this cancer of ours.

Mets sucks. We're not necessarily actively dying, but we'll never be cured either. We don't always look sick, even if we feel sick. It becomes a chronic, invisible illness that's killing us slowly and it feels like we fade out more and more with every year we survive. We're often not welcome in cancer support groups, asked to not share our diagnosis lest we "discourage people".

This is the purgatory of breast cancer, the in-between that falls through the cracks. I want to do more, I want to make people realize where their donations really go, get people to realize that mets research needs more funding. I want us to be more visible, to have a louder voice, and I look around at the women who are already doing that, donation groups like METAvivor which are channeling funding to mets research, and see that we're still getting ignored. How much more will it take, when will people start to listen, how will we become visible?

I'd like to think that it's the lack of mets funding that's been hurting Komen so badly the past few years and while it certainly plays a part, the big blow is the withdrawal of funding to Planned Parenthood for screening low-income women for breast cancer. It still goes back to "early detection" when women younger than the "accepted" age for breast cancer develop the beast. It still goes back to "early detection" when that really doesn't do jack for stopping anyone from developing mets. It's all about early detection and the "cure" which doesn't exist for ANYONE.

It makes me feel like I'm faking it. I get a shot once a month, take a pill once a day, my hair's growing back, I just suffer from hot flashes and that's it. I have cancer. But I'm beating it back and it's not harming me at the moment. I'm not cured, I don't have a "five year milestone" after which I'll be able to move on from cancerland. But I'm not "sick", and I'm not really doing anything either. I'm not faking it, but the Breast Cancer Awareness movement makes me feel like I am.

I'm sorry for this tl;dr full of feels that ramble all over the place. I don't want us to be invisible anymore.

And a few months ago, a store clerk, upon asking what kind of cancer I had (my partner and I were wearing shirts that said fuck cancer) and learning that it was breast cancer... her reaction was "oh, good" and a smile of relief. This is why mets gets ignored. There's no smile of relief for us.

Tired of "Hope" and "Cure"

Posted originally on the Young Survival Coalition Metastatic Disease forum 16 July 2014 - 08:54 PM

 

I hate being in the breast cancer club, but generally speaking, I like breast cancer sites. I like reading news on research, I like connecting with others who might be going through the same thing.

I know I'm a tiny part of the population (10%) that was diagnosed as metastatic as the initial diagnosis, and that only 30% of the rest of the breast cancer patients go on to be metastatic, and even adding up those two it's still less than half...

I'm tired of seeing so little about metastatic disease. I've ranted about this before elsewhere, but it bothers me. There's no cure for stage IV. The hope we have is hoping to live long enough to get a few more milestones under our belt, which is pretty much an "also ran" quality of prize as far as prizes go. So many websites focus on "cure", and "survivor stories" and I admit to being frustrated and annoyed with women who tell their stories as if getting a stage I or II diagnosis was the Worst Thing Ever. I know I should be ashamed of myself since for them, I'm sure it was, and it's not like they might not become one of the 30% but... it's still frustrating.

So much goes into early awareness, how about awareness for Stage IV? Breast cancer isn't what kills you, it's metastatic breast cancer. If all the cutesy slogans claim to be about saving lives, why isn't there more talk about mets?

I have ALWAYS had a personal issue with being ignored. It pisses me off like little else can. And I'm feeling ignored and the worst part of it is, it's not just me being ignored, It's the 40,000 of us - women and men both - who die each year in the US from metastatic breast cancer. Early Detection awareness doesn't do anything anymore. Everybody's aware of it. Such a paltry amount of the fundraising results go to mets research. Don't we deserve at least 30% I can make a case for 40%. In reality, we get Two Fucking Percent. Two.

I don't have much a point to this post. I'm angry and frustrated and ranting and feeling ignored, and it's making me feel spiteful and bitter toward those with earlier stage cancers. I want to scream "Don't tell me you have it hard! You don't know hard until you're stage IV!" which isn't fair, and I know this.

But at the same time, I'm handling my diagnosis far better than a lot of my mets sisters, and most of those got the kick in the gut with their diagnosis being a recurrence after they thought they beat that cancer bitch. I can't say I'd be handling this nearly as well if I were in their shoes. But I am handling it well. I'm the one who's consoling everybody, I'm the one who was fighting to keep everyone's spirits up, to keep them from getting too depressed or worried. I'm the one who was making the jokes and keeping things light and breezy and easy, I'm the one. And I'm the one who has to face that I might or might not have a few more years here and I have to give up my career goals and so much because of cancer.

If I'm handling it this well, and I'm getting frustrated by the lack of a voice, lack of awareness and acknowledgement of stage IV, frustrated by "I have Stage II breast cancer and it's so terrifying!" I wonder how other women with mets who've got it worse off than I do feel.

I'm sorry if I offended anyone and I do know it's not right for me to judge the circumstances of others, but it's just how I feel sometimes.

Treatments and cures are built on our backs, with our blood and tears. Is a little fucking awareness on breast cancer sites acknowledging the Stage IV people too much to ask?

What's been up lately

On May 13th, I had my last chemo infusion for the time being.  I'm on Zoladex and Femara. There's no evidence of a tumor in my breast, and the liver tumor is 0.2cm in size.

I'm having post-chemo blues, as I've mentioned in another post. I don't feel like I should be having blues because I'm getting married.

I was accepted by Wish Upon A Wedding. Sept. 28, Jen and I will get married. Probably in Omaha.

I want to write a long post gushing about this but right now there's not too many details set in stone. We meet with the wedding planner on the 11th. I'll probably have something to gush about after that. Right now I'm still in the in-between doldrums and binging on Grey's Anatomy on Hulu.

The Not-Quite-Post-Treatment Post-Treatment Blues

I'm mets. I get that. I'm not post-treatment, I'll never be technically post-treatment even if I hit NED for a little while. So it's not really post-treatment blues. But it kinda feels like it. I don't know how to classify it. I'm no longer in chemo, no more weekly trips to the clinic - that's down to once a month for the Zoladex shot. I take a little pill, just one little pill, Femara, for the rest of it. (I take more meds than that, but that's the only one I'm on for the cancer.)

I've made the decision not to return to work due to a variety of factors, and I'm content with this.

I'm in a fog. A fog of meh. I have All The Feels ever and I'm sitting here navel-gazing and binging nonstop on Grey's Anatomy on Hulu and actually feeling thankful I'm getting out of the medical profession even though I miss it because having time to spend with my partner is more important to me and what I want to do now, but I'm not doing anything right now. I do nothing but sleep and watch Hulu and I don't want to do anything but at the same time I do, but I don't know what. We sleep during the day and are up when nothing's open and I don't really want to go shopping because there's nothing we need (except more trash bags for the kitchen, but that doesn't count)

I'm post-treatment from chemo and weekly visits and I feel... bored. I should get up and do something, there's still a lot of things I have to do, and I have a wedding coming up, but I'm not... here. I'd just gotten used to that New Normal and now it looks like it's all back to the Old Normal but it's not and it never will be, and it's taunting me with its normalness and it's not real.

It's an illusion.

It looks like Old Normal but it's not. It's still New Normal but it's a new kind of New Normal, and I'd just gotten used to the old New Normal and got into a groove and a steady routine and it was all clockwork and I'm all chill and zen with it and it's fine and now it's gone and it looks like Old Normal but it's not and I have to get used to this new part of New Normal.

I don't want to go back on chemo because that means the Zoladex and Femara didn't work and I'm out those treatments and back to the drawing board and chemo sucks and it makes me feel like crap but at the same time I feel like I'm actively fighting the cancer. I take a pill every day and a shot once a month and that doesn't feel like I'm doing enough. It's too close to the Old Normal.

It's frustrating. I want my old New Normal back, or my old Old Normal back. I don't like this grey in-between Neither-Old-Nor-New Normal. I don't like it here but at the same time I desperately hope I stay here because I know not liking it here will pass when I just snap out of these doldrums of bleh and get caught up on Grey's Anatomy and have to find something else to do. (I don't want to stop watching it in case they take it off Hulu before I get caught up to the current season)

I want to tell my pdoc to up my Prozac, but these Feels aren't necessarily caused by a chem imbalance the way my depression generally is, but due to Things That Can Be Talked About. Maybe I should see a therapist except I know what the problem is and what the solutions are, and talking about them once an hour every week and being asked "How does that make you feel" and other such questions is not going to fix things. I'm in Point A, and I can see where I'm supposed to be at Point C, and I know how to get there through point B so that's not the problem. The problem is I lack the motivation to do anything to get to B so I can go to C. I'm just happy to sit here on my hiney and turn into a veggie except for the part where I'm not, not really.

I'm happy but I'm not. I'm in the New Normal but I'm not. I'm post-treatment but I'm not. I'm sick but I'm not. I'm this but I'm not. I'm that but I'm not. I'm in-between but I'm not. I have All The Feels but I don't. AND IT IS SO FUCKING FRUSTRATING. Except for the part where it's not.

tl;dr - mets sucks.