Kiss of a Rattlesnake

I hope this blog hasn't turned into me whining. I would hate that.
wahhh all day- but fuck- I can't just vent to people more than my mother, kids and husband- and best friend. I just feel like , how many times can this chick just complain about how much her feet hurt? Enough.
The farther I make it down Tamoxifen Road, the shittier the path gets- I feel crappier now than I did during chemo or treatment on good days.
It's a different thing every day.
One day it's chest pains, you think you;re gonna die.
One day its moodswings, and crying and hormones, you worry even more about being around long enough to see your kid graduate high school.
"Silly" I say to myself- "Of COURSE you'll be here". "Just think positive!." But I feel like I'm taunting fate doing that. I could be dead in 5 years, who am I to claim to predict my fate?
It's like saying "Oh - hurricane??? This house has been here since 1960. No hurricane is gonna wreck it". And the hurricane comes and wrecks it. It happened all around me. People got cocky.
I don't want to be cocky.
I don't want to live in a fantasy world either.
I worry about the bone pain being precursors to something more later on, because nobody wants to deal with your shit after the cancer gets cut out and they send you off on your merry way.
Concerns about my workplace, it's possible involvement, little questions about dumb things, I felt like I was bothering them, and they refused to take the time to give a shit about BRIANNE, not the run of the mill breast cancer patient they see so many of all day. I feel like they won't do anything until I find a tumor or have some pain for a few weeks. They don't give a shit unless my cancer comes back Then they step it up. And that fucking SUCKS.
I'm in some pain, and I'm hating the side effects this dumb drug they wanted me to take is giving me.
Depression, mood swings, menopause, bone pain...the fucking bone pain, neuropathy---- wtf. I don't get a chance to see my oncologist again till May 31. I wonder if they ever read all the documents I sent about methylene chloride. They put me on these drugs.
I do this for my kids, I do this for them. These pills can't be the only way. This hemp oil needs to work better than this shit so I can kick Tamoxifen to the CURB.. I feel like there's more to keeping my cancer at bay. I would investigate these things if I didn't have kids. I just feel like I am jeopardizing some precious time right now even questioning taking this shit for the next 5 years. So many emotions.
I worry so much. I do this silently.
I'm left without breasts, a body that feels good without medications of some kind, I'm nuts all the time- my husband is a SAINT. Saint Mark of Solar. Patron saint of awesome husbands, hormonal wives and saintly men. I cannot even go into how much he means to me.
He listens to me whine, bitch, complain, cry...he brings me coffee in bed the mornings my knees feel pain. He's with me in a recon mission for Joe Leone's fresh mozzarella. He's just the best.
I don't know what I would do without him. He got a raw deal, I can't help but feel bad for that.
I worry a lot, but I'm finding out how awesome the feeling is rejoining real life in some respect.
Real life. Tattoos, getting my eyebrows done again, going out to see my husband play music (in wigs incognito is pretty fun.), going to the supermarket and nobody looks at you like a bald weirdo.
I won't talk about my hair--- it;s in baby Phyllis Diller stage. Ironically- my grandma is very good friends with Phyllis Diller's best friend and she just sent me a pair of India silk leggings because my grandma told her I love India, and she just got back here. But it grows OUT and UP. Not down. It's funny. I'm not a fan, but everyone tells me they love it.
I miss my hair :(
When I see someone who I haven't seen in a while, they ask me what happened to all my hair.
Um. My usual reply?
"I just kicked cancer's ass"
or "Thank you! My oncologist styled it for me"
Then people start crying and hug me.
I'm ok right now...please don't cry.
I'm not dead.
In fact- I feel an amazing sense of rebirth despite all this pain.
I love not giving a shit about dumb stuff anymore. I love letting things slide. I love hugging my kids after they do something really awesome and unique. I love the simple feeling painting walls lime green gives you.(Try it, really.)
It's nice- I have a bedroom in our top floor dedicated to my art and sewing and dying and I'M DOING IT AGAIN. I'm making quilts, and corsets and drawing more than ever.
I'm in and out of my room all day, working with Melody and the pincushion...the scissors, the time  I am now forced to take and take my time WITH.... stuff that took me a day in the past now takes 4 days--- I love the intricacy and depth of this new work though.
Cancer is a fucked up gift, if I haven't said that yet. I needed a major ass kicking. Cancer did it.
Cancer did it. It makes you think about your funeral and living to 108 years old 24 hours a day,  7 days a week. The dichotomy is mind blowing....For the best...cheers.
North Carolina, I see you in 7 days. <3
xoxoxoxoxox

just doing it

I love my friends, I love my family. I was thrown a party to help my family and the amount of love and healing there was awesome. I spent the whole day seeing and hugging people I hadn't seen in well over a year, being pulled in 5 different directions, with a toddler on my hip. Crazy. Both Mark and I also saw relatives we would otherwise see at funerals. It was great.
I spent the week afterwards just in awe of the amount of love in that room, floored.
Nancy, I wish we could have had more time to hang........

Part of me wants to post how I feel every day in public, to let people know just because treatment is over, does not mean that you are 'all done'. That attitude is wrong. My boss had that attitude, and others who have no idea can't see why I can't work anymore.
If I sat at a desk all day, I could work again. I don't do that, I need to lift and push and get into it. I miss that so much.
This bone pain is getting worse slowly---- building up as the weeks go by.
Painkillers are tempting me,but I just can't function on them. Weed- works. It's about the only thing that works.
I got all high and mighty after I was fired that I would go back to my roots, my sewing, my art that supported my family and I for years could come back. I got my sewing room all shaped up again, and I started to sew. and make art again.
The calm and peace I have at home cannot compare to anything. And I realize how unhappy I was ata job I clamed to love. I did love that job, but my heart wanted to be home. I would say that I was in a good place then, but I would be lying. I pretended to like it, and lied to myself. So this magical twist of fate in life put me back home where I belong.
But I'm trying.
Everything takes so long now, though. My arm hates me.
Doing laundry, dishes, organizing, sewing, cleaning. I don't cook much these days since my appetite is horrible between not being hungry at all, or totally nauseous. I should cook more.
It's a lot more work to do all this crap. The stuff you need arms for is totally underrated.
But I do what I can.
It's extremely frustrating, but it's a new thing that's gonna be around forever, might as well make friends with it.
Add Tamoxifen to this and we have lovely days.
I'm being sarcastic.
I won't see Dr. Cairoli till next month, and I'll be seeing Dr. Miller weirdly enough hours after walking in from getting home from NC like last year for that initial biopsy. Dr. Miller's nice. His kind eyelashes.lol.
I'll ask him about the pain and tamoxifen and wtf is going on with this arm.
I'm just not feeling great, I don't know if this is normal or am I sick again somewhere? Or is this the new normal thanks to Tamoxifen?
Hopefully I can get some answers or a new advice on how to live the rest of my life without issues. Man this shit just fucks.you.up.

where the coffee is to be had.

Plain and simple. I wonder if all of us has that in our own way. I'm not sure how people go back to work after this.
I was expected to be just as I was before surgery, no compassion otherwise. It ain't like it used to be by any means.
Parts of my heart misses a lot of that job though.
Most of it doesn't.

So I gotta vacation coming up. Back to NC, where we go every year. Someday I would like to see a tropical island. Never been before.
Some day.
We got a half of a house this year, oceanfront- my only requirement is that I can have my coffee as I sit and watch the ocean. That's my bliss right there. So we found a place with a nice deck, the kids have their own room and we will have neighbors on the other side of the house. I hope they're cool.
For the last 5 years we have gone to NC, we either have shitty weather or something else dumb happens. I just want a happy respite with my coffee at the ocean.
That was my dad's favorite thing too. One week we stayed with him at the beach, and he woke up every morning with his coffee to watch the sunrise.
Best thing in the world.
This beach is magic. My dad's remedy for everything was "go stick it in the ocean". I can't wait to do that. I don't swim in the ocean here- it's gross.
Last year I had my biopsy right after a week of cold weather, a condo with golden girls era decor and grumpy neighbors. And a balcony where my baby daughter fit through the railings. It will be different this year.
Time stands still here. 3 of my siblings also live there.
When I was 14 years old, I worked with a girl who was 19 and her name was Michelle. We were both artists- I worked with her for a summer in NC (our family would live there in the summers) at the campground game room. We scooped ice cream and gave change for the arcade we both worked in. We got to eat all the free ice cream we wanted too. She introduced me to Georgia O'Keeffe, and I made her listen to the Grateful Dead. We smoked cigarettes we bought at Piggly Wiggly and we used to drive around in her truck listening to oldies radio. Michelle and I would write letters to each other for years afterwards- we would decorate each other's envelopes- eventually our mail art got crazy intricate and it was every month I would get a letter from her. Then--we lost touch over the years.... I haven't seen her in about 20 years. I recently found her on facebook and a year ago, right before me- she was diagnosed with a rare cancer. Her hair and my hair look the same. we both have 2 children 8 years apart, have been married for 12 years, and she now lives in St. Louis. Her oncologist works with my cousin, weirdly enough too. We had chemo at the same time.
I got a letter from Michelle recently- she will be in NC at the same time I will, and I hope I get to see her.
So happy to see her.
It cannot get here fast enough.
HURRY UP VACATION.
lol.

xo
b

Enemy pills

I'm typing this on an iPhone which is weird, but it works I guess. It corrects me better than the desktop, which is good. Been having good days and bad days, but this Tamoxifen shit plain sucks. I've been on it for 4 months now and this ain't fun. The bone pain side effects are worse than chemo's..... I'm down for a whole day when that happens . I do my best though to get up and push it out. It's hard though. I'm also finding that I'm unable to eat much anymore because these pills cause major nausea and sometimes, like today, I wake up throwing up. Since there's nothing in my stomach its a vicious cycle of dry heaving and my body is hating it. People seem to think since treatment is done, that I should be fine, but that's not the case. I officially hate tamoxifen. And it's really stressful since my oncologist won't deal with this because I'm not insured. If it was a matter of recurrence , he'd see me, but otherwise no. No health insurance sucks. I was told to go to my general doctor for anything I need. Ergh.... OSHA is also refusing to return my calls, lawyers tell me I don't have a case. I won't give up though.
Someone has to listen. Somewhere.
So I did all the treatments - and the neulasta like side effects right now are really unpleasant. Why now? This is what I do to keep cancer away, and it makes you feel like this? What kind of shit is this??? It's all so exhausting. Back to bed again..