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.

Kohl's contacts Metavivor!

The power of social media (and the threat of lawyers) has come shining through. Kohl's called Metavivor, and the conversation was described as "amicable". They're expressing a willingness to listen.

Keep using the #TalkPink tag, and let them know what we want. We just want to be heard. 30% of funding should go to Metastatic Breast Cancer research for the 30% of us who develop it.

It's not just women - men get breast cancer too, and a disproportionate number of them develop metastatic disease due to the lack of awareness of male breast cancer.

Metastatic breast cancer is the form that kills 40,000 people - women and men alike - each year. Yet only 2% of research funding goes toward that.

Pinkwashing has created the mindset that with early detection, we're cured. 20% of the 30% were early detections, and yet the cancer cells still managed to slip under the radar and metastasize in the body. For 10% of us, early detection failed.

More and more younger women are developing metastatic disease, and for some of us, like me, it wasn't even diagnosed until it reached Stage IV mets. Pinkwashing has created an oversaturation of awareness and a loss of understanding of the risks and dangers. Breast cancer can be cured? It's not that easy nor that certain.

Chemo: The Good, the Bad, and the Just Plain Weird

So I'm on a dose-dense treatment of Taxol. I've just finished 9 infusions, with 12 more left to go. It's working out pretty well for me so far. My primary tumor shrunk by 50% after just six, and I get another CT scan after I'm done with these next three infusions. Each round is three infusions, followed by a week off. I'm currently on my week off for round 3, and I start round 4 on Tuesday, March 4th.

The bad: Hair loss on my head, and I'm losing my eyebrows and eyelashes. I also have really dry sinuses, and keep getting bloody noses and blowing out clots and scabs. Disgusting. And there's the fatigue. The Fridays following my chemo Tuesdays are always my worst. I feel like a giant bruise and just want to curl up and sleep.

The good: no nausea or neuropathy to date. I did have one day where I felt queasy if I was up and moving around, after my 9th infusion, but that was the first. Hair loss does include my legs and underarms too, so I'm not having to shave anymore so I'm saving on razors (and shampoo). Also, I've stopped bleeding. Which means no cramping. So I don't have to deal with periods on top of this. That's very nice.

The weird: I eat so much! I'm always eating. I'm hungry. I can pack away food like never before. I crave it all, the protein, the carbs, and the sweet desserts. Tonight I had a  huge piece of Lasagna from Old Chicago, and I just decimated it. And I still somehow had room for the craving for dessert that kicked in when I was 3/4 the way through the meal. Frozen yogurt and fresh fruit.

The Elephant in the Breast Cancer Room

Not so much an elephant anymore, because a lot of people are coming to realize just how hard Komen sucks. But not enough people realize that yet. It's still picking up steam.

First, they yoinked support from Planned Parenthood, which provides a full range of health care for women, including those below poverty level. Some PP clinics were even able to offer these services for free to women who couldn't otherwise afford them. These services included life-sparing early detection procedures for cancer.

They also have a history of suing anyone and anything they suspect might be infringing on their "copyright". They're not raising awareness for breast cancer and funding research. They're running a pinkwashing business and raking it in at the cost of lives.

Now, they're stealing someone else's campaign, and pinkwashing it into another cutesy movement, and throwing the lives of those who are dying under the bus in the process.

In 2012, METAvivor started The Elephant in the Pink Room campaign, to combat the pinkwashing and bring awareness and attention to the 30% of us with Metastatic Breast Cancer.

Now Komen has teamed up with Kohl's to bring us the Pink Elephant campaign. Because we apparently don't talk about Breast Cancer enough. Apparently we don't have enough Awareness. We need to Talk About Breast Cancer. And in the process, let's overlook those 30% of women while stealing their campaign because dying is, you know, just so depressing.

There's been other blog entries, a lot of them, about this travesty, and I cannot recommend strongly enough that you go read them.

Komen and Kohl's had a social network hashtag for this campaign: #TalkPink. The #bcsm on Twitter is doing their own Occupy Hashtag, dragging it into the metastasis mud and bringing awareness while keeping the spotlight on the douchebaggery of these two businesses.

Keep getting the word out. Boycott Kohl's until they drop the campaign. Defund Komen and run them out of town.

And support METAvivor, which has issued an awesome rebuttal letter to Kohl's over this incident.