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.
About Me
- Susanne
- Diagnosed at 39 with Stage IV IDC breast cancer, grade 2, metastatic to the liver, and ER/PR+ and Her2-negative.
Wednesday, August 13, 2014
Saturday, August 2, 2014
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.
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.
Friday, August 1, 2014
PSA
So I have it on good authority that my choices for background music for my funeral viewing suck. No Jpop for me. All the cries. ;_;
Oh, well. I suppose when it comes to music, I really should listen to the person who 1) will be there to listen to it and 2) can actually HEAR the music in the first place.
Funeral viewings aren't exactly the place for peppy, perky songs sung in Japanese. Gosh darn it all to heck.
And I accidentally resolved my dilemma about when to share this blog with Jen by sharing it on FetLife in a comment on the Breast Cancer Suvivor/Support group and she saw my comment show up on her feed.
Oops. Oh, well. That solved that problem, I guess.
And yeah, I'm on FetLife. I have all the sexual drive of a rock thanks to the medications, but the snark groups there (like Spectators Only, No Participants and Profile Pitfalls) are always good for a laugh. Oh noes. The world knows I have a passing interest in Kink (and yes, oh god yes, it predates 50 Shades of Utter Crap) however shall I cope.
In other news, Mom's getting me my first pedicure tomorrow. We shall see how this adventure goes. Related, I have two new pairs of shoes. A pair of gray peek toe pumps, and a pair of black solid toe pumps. They are surprisingly comfortable for my feet not wearing anything but sandals in forever.
I also picked up some new ecig juice to try. Bavarian Cream. Mmmmmmmmm.
Oh, well. I suppose when it comes to music, I really should listen to the person who 1) will be there to listen to it and 2) can actually HEAR the music in the first place.
Funeral viewings aren't exactly the place for peppy, perky songs sung in Japanese. Gosh darn it all to heck.
And I accidentally resolved my dilemma about when to share this blog with Jen by sharing it on FetLife in a comment on the Breast Cancer Suvivor/Support group and she saw my comment show up on her feed.
Oops. Oh, well. That solved that problem, I guess.
And yeah, I'm on FetLife. I have all the sexual drive of a rock thanks to the medications, but the snark groups there (like Spectators Only, No Participants and Profile Pitfalls) are always good for a laugh. Oh noes. The world knows I have a passing interest in Kink (and yes, oh god yes, it predates 50 Shades of Utter Crap) however shall I cope.
 | ||
| yes, basically. |
I also picked up some new ecig juice to try. Bavarian Cream. Mmmmmmmmm.
Thursday, July 31, 2014
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.
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.
Saturday, July 26, 2014
"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 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?
Wish Upon A Wedding
Wish Upon a Wedding, as I mentioned a while back in my last post, has granted Jen and I our wedding wish.
Our wedding planner, Tina, has been hard at work getting positions filled, and finding venues and volunteers. A marvelous photographer and videographer have already met with us for the engagement session, so the foundation can share our story.
Susanne & Jennifer : A Love Story
Many thanks to Marla Austin Photography and A Sound Impression for their hard work!
Our wedding party has all confirmed being able to attend, and the invitations have been mailed out. We're already starting to get the RSVP cards back.
Sunday, the 28th of September, is looking to be a long day, as we have to be at Omaha by ten in the morning to get checked into our hotel, and then meeting at the parking lot of the Millard Plaza Ballroom in Omaha to board the party bus donated for the evening by the Jone-Z company. We'll have a stopover in Council Bluffs for the wedding party to get hair and makeup done for the ceremony, and then off to Shelby, Iowa to the Willow Creek Glass Chapel for the ceremony.
The wedding colors are raspberry pink, gray, and black. Jen's dress is pink, mine is a soft dove gray, and the wedding party will be in black. There will also be touches of green and teal to represent the metastatic breast cancer ribbon.
We're asking that in lieu of gifts, donations be made to METAvivor Research & Support, Inc. in our names.
In the meantime, I've been writing posts on the YSC Forum and I should repost them here as well. It captures my frustrations with having metastatic disease, and the overall lack of support and research that goes into a cure for us.
Our wedding planner, Tina, has been hard at work getting positions filled, and finding venues and volunteers. A marvelous photographer and videographer have already met with us for the engagement session, so the foundation can share our story.
Susanne & Jennifer : A Love Story
Many thanks to Marla Austin Photography and A Sound Impression for their hard work!
Our wedding party has all confirmed being able to attend, and the invitations have been mailed out. We're already starting to get the RSVP cards back.
Sunday, the 28th of September, is looking to be a long day, as we have to be at Omaha by ten in the morning to get checked into our hotel, and then meeting at the parking lot of the Millard Plaza Ballroom in Omaha to board the party bus donated for the evening by the Jone-Z company. We'll have a stopover in Council Bluffs for the wedding party to get hair and makeup done for the ceremony, and then off to Shelby, Iowa to the Willow Creek Glass Chapel for the ceremony.
The wedding colors are raspberry pink, gray, and black. Jen's dress is pink, mine is a soft dove gray, and the wedding party will be in black. There will also be touches of green and teal to represent the metastatic breast cancer ribbon.
We're asking that in lieu of gifts, donations be made to METAvivor Research & Support, Inc. in our names.
In the meantime, I've been writing posts on the YSC Forum and I should repost them here as well. It captures my frustrations with having metastatic disease, and the overall lack of support and research that goes into a cure for us.
Subscribe to:
Posts (Atom)