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?

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.