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.

Progress Report 3/4/14

"I'm melting! I'm melting! Oh, what a world, what a world! Who would have thought a good little girl like you could destroy my beautiful wickedness?"

If my tumor could talk, that's what it'd be saying.

My onc's progress report from last week is finally on my patient portal website, and I went from mass of 6cm and a significant swelling and thickness in my left armpit at diagnosis at the start of my DD Taxol Dec 10th, to this report on the 4th before my infusion that day:

"L breast was 6cm firm mass at 12-1 o'clock position this is now less defined ~ 2-3cm w/ overlying redness firmness extends into L axilla. L axilla mass now~ not present"

I have another CT Scan coming up at the end of the month to get a better picture and to also check up on my liver mets. (More of their demonberry juice, yum). The overlying redness is residual from when it exploded in a hissyfit after my first infusion and ruptured through the skin in two places. It's healed over now finally.

I'm also amused because in the psychiatry portion of the progress report, he describes me as "alert and oriented times three." I know what it means, but it just sounds amusing, like it goes hand in hand with his teasing me on how bubbly and on the ball I am at my appointments.

A friend commented to me about the Wizard of Oz reference on IRC:
Friend: ...now I'm almost disappointed that your tumor didn't have its own flying monkeys.
Me: That's what the mets is! "Fly! Fly, my pretties!" and off it went to my liver where it started making like it was the scarecrow, but in a surprising fanfiction plot twist, the monkeys got their asses kicked.

Laurel and Hardy from Acme Shipping Company

Yesterday, we went to the house to take some more things over - like video game consoles - since it's supposed to be rainy today. We get there, and there are two big boxes by our front door. One was tall and skinny, and I'll call it Laurel. The other was short and fat, and that's Hardy.

Laurel was maybe four feet tall and for feet wide, but only about six inches deep. Hardy was three feet deep, and three feet tall, while being four feet long. The markings on the box indicate that it might be the bed my parents ordered off Amazon for their room in the new house.

Thing is, they ordered a queen, and there's nothing queen-sized about either boxes. Not to mention the bed was supposed to be delivered Saturday the 15, not Monday the 10th. But damn, they were heavy. We somehow managed to struggle them in the front door, where I promptly attacked them with box cutters to find out what in sam hill was going on.

Laurel was a queen sized box spring, compressed and folded in half. Hardy was the mattress itself, folded and rolled up like a cinnamon roll without the icing.

This is where the Acme Shipping company comes in. Itty bitty (in comparison) boxes, get them open and the product out, and boom, it explodes into full-size. Straight out of Looney Tunes.

The box spring, unfolded and expanded, is very normal and queen-sized and sturdy. The mattress held no creases that one might expect from a mattress being folded and squished, and was rather comfortable when I collapsed on it after we finished fighting with everything.

WHO SHIPS A BED IN LITTLE BOXES? Acme and apparently Amazon. Or maybe Amazon has been Acme all along. WHO KNOWS. I never would have been able to get it inside without Jen's help, and I'm just as glad that it came yesterday and not today. Not only is it supposed to rain today, but I have chemo today. And did I mention them's were some heavy fuckers? Have you ever lifted a queen sized mattress? Have you tried lifting one that was devoid of air and compressed denser than a black hole? I can say I have.

It rolled into the bedroom nicely though, before I took off the tape and overwrap paper. The box spring was bubble-wrapped.

Well, between the bubble wrap and overwrap, that solves my problem of what I'm going to use to wrap my big, good lamp in for the move, I guess. The boxes, unfortunately, could not be salvaged and repurposed for the move. I had to cut them up too much just to get stuff out, and they were already starting to show signs of extreme wear and were filthy to boot.

Why are UPS boxes almost always covered with a layer of dusty grime? Nasty.

But there is a bed, and it came in a box. For a brief bit of time yesterday, my life took a turn into Looney Tunes land.  I can now say I fully sympathize with Eddie Valiant. ~ Smile, darn ya, smile! You know this old world is a great world after all. Smile, darn ya, smile! And right away watch "Lady Luck" pay you a call. Things are never black as they are painted, time for you and joy to get acquainted. Make life worthwhile, come on and smile, darn ya, smile! ~

Busy!

Oh, man. Trying to pack and do chemo in the same week is exhausting. It's like this mountain of work, and I feel like I've only traveled a couple feet up, but damn, them's some hard feet. I did get some new things for the house (a socket adapter for the laundry room light bulb, a curtain rod for the bathroom, a box cutter, a couple ultra-absorbent dish mats, a new sheet/pillowcase set, some more water pitcher filters, dish soap, dishwasher soap, paper towels, plastic storage bins I can use for packing and later for storage, 9v batteries for the smoke detectors, and a new outlet surge protector for the bedroom since the one I have now is getting old and plugs are falling out.) and moved a few things from the apartment to there, mostly working on really fragile breakables that I don't want jostled around any more than absolutely necessary.

But that means numerous trips up and down 2 flights of stairs and that's steadily becoming more difficult. I can't be out of here fast enough at this rate.

I won't have to do the packing all by my lonesome - Mom's coming up from Texas to start helping on the 17th or thereabouts. I just have some stuff that I'd rather take care of myself before she gets here. And the place is so messy it's hard to know where to start with packing. I should clean up.

I need to get more things over there tomorrow, and I have all of next week to do that. But I can only do a little at a time, not the way I used to, so I won't be able to get as much done as I would have in the past, and that frustrates me. Especially because the biggest part slowing me down is navigating those stairs multiple times a day in the process. I am so done with those stairs. They weren't that much of a problem for me before chemo, even though I'd bitch and moan about them from time to time, but I could handle it. It's getting harder the more fatigued I become.

Jen's parents are giving us their old washer and dryer, along with their old fridge. So we'll have two fridges, one'll be kept in the garage for extra space so we can buy in bulk a bit easier. Not sure when we'll be getting those in, but that will also help, no more lugging loads of laundry up and down the stairs and trips to the laundromat.

Tomorrow, I suspect I'm going to feel even more like a giant, beat-up bruise than I normally do, and I'm still planning to try to make myself Do Things. We'll see how that goes.

*bell rings* Round Four!

I start Round 4 of Taxol today. I have 9 more infusions left to go counting the one I get today. (If I said 12 elsewhere, it's because I can't math). I'm going to push for surgery afterward, especially to have the tumor examined to make sure it's still ER/PR+ and Her2- before we begin hormonal therapy.

I'm also going to talk about NOT getting Tamofaxin, because I've read that it interacts poorly with Prozac, which I need to keep my brain from going loopy-depressed. I've battled chronic depression all my life.

Kohl's is still using the stupid Pink Elephant campaign despite now being fully aware they are co-opting METAvivor's campaign. We're still doing Occupy #TalkPink on twitter, and I'm trying to get some other #Talks off the ground, like #TalkMets, and #TalkBlue (for male BC) and #TalkIBC (for inflammatory breast cancer). It's slow, but it seems to be picking up.

Today's a busy day. I ended up with an extra Metastatic Navigator kit from YSC, and I'm meeting with my Nurse Navigator at the cancer center today to hand the extra one over to her to pass it on to someone else who could use it.

I also will probably find out if I'm getting a house. My parents are going in on renting a place with me, my partner, and our roommate so they have a place to stay with us when they visit instead of hotels and can help take care of things around the house if I need it. We found the absolutely most perfect place ever. Cross your fingers and say your prayers that we get this place. I will cry so hard if we don't. Please let something go right.

EDIT: WE GOT THE HOUSE!!!!!!!!!

I'm lucky my parents are finally in a financial place in their lives to do this, and I'm doubly lucky that they accept the fact their only child is gay, and accept my partner as their own daughter. My partner's parents are pretty supportive too, although my MiL is still pretty resistant to it most of the time. She bounces back and forth. My FiL is awesome. We're damned lucky.

My partner, Jen, is slowly coming to terms with this. It scares and depresses her, and she's taking it harder overall than I am. I haven't shared this blog with her yet because I don't feel she's ready. It took me a while to get to a place where I felt ready to discuss my own mortality.

I love her dearly. She's my light and my always. We've been together seven years this January, and still going strong. The early years were the hardest, before we got a clear diagnosis for her own health problems and got her on medication which stabilized it. Her health problems fall under the medical end of psychological, along with severe anxiety disorder, so it doesn't help her in getting to where she can handle my diagnosis easily. She's getting there though, and I'm so proud of her. I'm so in love with her. I'm so lucky to have her in my life.