Five hundred twenty five thousand six hundred minutes

"Five hundred twenty five thousand six hundred minutes,
Five hundred twenty five thousand moments so dear.
Five hundred twenty five thousand six hundred minutes,
How do you measure, measure a year?

In daylights, in sunsets,
In midnights, in cups of coffee.
In inches, in miles, in laughter, in strife.
In five hundred twenty five thousand six hundred minutes,
How do you measure, a year in the life?"

Tuesday afternoon, November nineteenth, 2013. I found out that the biopsy results came back positive for invasive ductal carcinoma breast cancer.

A year ago today.

I went from being completely pinkwashed (as my twitter handle VictoryOverBC proves) to having arrangements to pay for my funeral expenses underway. 

I'm also further from death now than I was a year ago, with the tumors either quite tiny or gone altogether. There's still microscopic metastatic sites that don't show on scans, have been battered into submission by chemo, and are being suffocated by hormonal therapy.

I retired, I finished a novel, I had my best month ever with NaNo, I've made new friends, and lost some of them. I've helped people, I've moved to a new house, I've gotten married. I've discovered I like potato salad when it's made with sweet potatoes, I've met an oncologist I'm glad to have on my side in this.

I'm re-evaluating my language when it comes to cancer. I grew up, as so many do, thinking of cancer in terms of battle language. I grew up on Tour of Duty and Platoon and Aliens, I'm a fan of the military group in Fullmetal Alchemist, it was as natural as breathing to adopt the battle allegories as my own in the beginning.

But I'm starting to understand how busted that language is, the way so many aspects of our language are busted in terms of women's rights and rape culture and racism. Just because it's how things were always said or done is not a valid reason to continue them.

I'm not sure what language I want to adopt to replace the war mentality. Because on one hand, it is a fight. But when you have metastatic breast cancer, by that terminology, you're fighting a losing battle, or winning a Pyrrhic victory, with NED coming with CHF and neuropathy. And many times you don't even get NED.

It's a fight, and it is a battle. If that language is busted, I'm not in a place where I can divorce that from my life in cancerland yet. But I can see that dying is not losing the battle. Living each day is winning. Each day that I have won since my cancer diagnosis is a victory.

Each minute is a victory.

I have five hundred twenty five thousand six hundred victories against breast cancer under my belt, and I intend on getting far more than that. I don't lose. I don't quit. Dying isn't losing the battle. There has to be another bridge here, for the metastatic crowd. It's not a win-lose dichotomy. Like how gender is not as binary as male-female, victory isn't either. 

The system is busted. The language is busted. And neither embracing nor avoiding the battle language is quite the answer. But when you're used to looking at either black or white, it's hard to pick out the shade of gray that falls between. I'm trying to see it, and I'm trying to describe it, and not quite managing it.

I'm fighting for my life, and every day, I win. When I go, I still win, because it will still be on my terms. The only way I could "lose" is if something else happened, like an automobile accident. That's not on my terms. I can't fight that. If I can fight, I win. Victory is measured in light. In love. Not in the calendar location of a funeral.

"In five hundred twenty-five thousand
Six hundred minutes,
How do you figure
A last year on earth?

Figure in love.
Figure in love.
Figure in love.
Measure in love."

"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.

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.