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.

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.

Deep Thinky Thoughts™

I know I haven't updated this in a while. I'll work on a post to bring things up to date later. Later. Not right now. I have too much in my head right now to focus on that. A friend on the book of faces posted a link about the need for doctors to be willing to recommend palliative and hospice care for terminal patients, and it hit off a panic button in me.

This past month has seen a lot of losses among the metastatic ladies in the online community, and although I didn't know any of them particularly well, it's still a bit of a shaker. The average lifespan for someone diagnosed with metastatic breast cancer is three years. There's plenty of women who live longer than that, but a lot of women who die far sooner than that.

I only have the one spot on my liver. Just one. And I haven't worked my way through any treatments yet, save for one: Taxol. That's just one scratched off a long list of the things available to me as an ER/PR+ Her2- breast cancer patient. And my tumors responded quite nicely to the chemotherapy. I'm starting in with Zoladex at the end of the month in hopes that it will help keep the tumors stable for a good long while.

It still scares me sometimes to think that I'll be on hospice care someday. I don't intend to stop fighting until I've run through everything the medical world has to offer me. I can't stop. I won't give up, I won't call it quits, not while there's still a chance something might work, not while there's still treatments I haven't tried yet. I'm not giving up.

A part of me is afraid my care team will give up on me, though, and reading articles that encourage doctors to think about offering hospice care instead of treatment makes me panic. My onc has promised me he'll fight with me on this, and I have no reason to doubt him, but I'm still scared of being told "We think that hospice would be better for you than X or Y treatment."

That's just the beginning of the end and while I accept that there's no cure for Stage IV, I'm not willing to accept the end is anywhere but a long way away from here.

This isn't fair. This isn't fair. Fuck cancer. Fuck this. It's not fair. I have people who need me. I can't give up and I won't give up and hospice is giving up and I can't do that. Let me live. I accept that this disease will kill me, but I'm not ready to go. It's just the one spot, I have a lot of treatments available to me, I'm not going to be in the lower end or middle of the statistics. I can't be.

Fuck cancer.