Like a Rainbow

I wish this blog didn't have to be private, but I'm still  happy I got readers. This will probably be my cure for insomnia - and let's hope that stays away.

It's 2:28AM, I cannot sleep- and of course thoughts have been running through my head.
It's been difficult to sleep not just because of the Tamoxifen, but the radiation burns seemed to latently arrive in the last 3 days. They are healing great under the armpit, but all of a sudden it seems it's coming out from underneath the breast. I guess the radiation beam finally made it's way through my stomach fat after all this time and came through to the surface. and it's the part of my skin that I can feel, so it's a constant bad sunburn. It's not the fun burn like a healing tattoo has either. It sucks.
I hope it doesn't start to peel or bubble- that would be gross. I just keep putting my marinade on. It doesn't relive the pain though.
Pain is daily, no matter if I take Oxycodones all day. I still feel it. I don't take Oxycodones at all, unless it gets terrible at night.
The burns, the nerves in my arm, the bone pain from Tamoxifen in your knees and fingers, and the annoying sting of neuropathy. I'll taking a mind over matter stance- I'm practicing visualization.
I am not feeling 100% these days- but I am doing my best to get there. Just need to get through this acclimation stage of Tamoxifen. It really messes you up- It SUCKS. I am at such a loss because I do not like pills, but I need this pill to live. Or do I?
I don't know. These side effects are kinda shitty. Constant nausea anyone?
Again, this is one of many thoughts that just go right into my head every day. It's such a world of wonder, man. All day. I just need to positively affirm everything better. No more using the word 'but' so much. Who knew being a cancer survivor took so much work?
I feel like I was given a gift- and now I gotta respect it- between rest, taking care of my container, my brain, my organs, my well being, my soul- all that needs super maintenance now it seems. Or maybe I am thinking to hard and stressing myself out over not stressing myself out. hah hah.
cue "Man in the Mirror".
This blog I think has been the biggest help. Hi Nancy!
I also worry about my kids too- a lot. I worry if Melody is all right after the fact i worked in an environment that no pregnant woman should have been in. If Azalea is going to be ok- she does her best to be strong, but she looks scared a lot when people get sick around her. I feel horrible I have to be one of those people - she lost my dad, Mark's mini-stroke last year- now my 85 year old grandma is falling apart quick and she's upset about that too. She's a sensitive kid. She hangs tough, though- and she's open with her feelings. This can't be easy for any child.
Melody is now 2 and a half and a freaking riot, holy moly. Not to mention that she is hell on wheels and a force to be reckoned with. Nothing like her sister. She talks pretty weel for her age, and we notice that she picks up on things more than we imagined. She sees my scars and points to them and said "They cut them off". and "They took mama's belly and cut them off. Her boobs.". It's hysterical.
Imagine when she says it to a stranger. That'll be fun.
She also recognizes breast cancer- the Avon Walk For Pink Profits commercial came on and she heard "breast cancer" and said "Breast Cancer! Like Mama!". Nice. Thanks kid.
So I tell her that the breast cancer was bad and that was cut off, and the doctors helped mommy get better and it made booboos on mama's boobs and belly. But I'm all better now and the bad breast cancer is gone. Bye Bye. Goodbye breast cancer, bad. Go 'way!
Why do I have to explain this to a kid who isn't 3 yet? Christ.
They are the best kids, though- I love them tons.

Dad's view from our camper in Emerald Isle, NC (facing the beach)

I can't wait to take them away from NJ for a bit and get them out of CancerTown for a little bit.
I went through all that treatment and now the Tamoxifen just extends the vacation. ergh.
I miss NC so much, I miss my siblings and coffee on the beach.
My dad would go down there in between treatments and it would help him so much.
He had a bad run of some chemo once and afterwards, he headed to the beach. After 3 days, I spoke to him on the phone and he sounded like a different person. I said "Dad, you sound like a rainbow!". He did!
I wanna feel like a rainbow too. Let's go down there. Soon. Cash is tight right now.
I hate speaking of it, but a few friends have started to organize a benefit her on the shore in April  to help with some expenses and bills - for which I am eternally grateful. Oh my goodness. I really cannot express how thankful I am. It makes me feel funny talking about it, but I'm grateful- this is much needed for our family. (Thanks guys!!)

Maybe we can get down there afterwards if we have some dough left over. I think my kids and all of us deserve some semblence of a real vacation. We've never had one. I have never seen a tropical island, left the country, got on a plane since 9/11 and I haven't been to Florida since I was 14 years old.
I'll be selfish and say that much. I want a fucking vacation!

.............still no OSHA report yet....................

till tomorrow~
b

After the storm:::

Well that was a shitstorm.
Tamoxifen came on with Hurricane Sandy like force. The next morning, the google "tamoxifen rage" brought up some great results. Virtua had never heard of anyone with this before- I told them to google it too so I wasn't crazy. Cause I sure felt like I was.
That was a Nuclear PMS to end all PMS's. And I have to deal with this for 5 years? Really?
I know now when the freak switch flips- so hopefully I can recognize it next time it happens.
I do not like me at ALL during that.
Our hormones are crazy things.
Once my radiation burns heal, I am changing my life in ways that require more kale, walking outside, and dancing. I don't own walking sneakers... I am ordering a pair today though. and That's that.

I did have a bright spot the next day when I was able to make up with my mom and she took the kids overnight as I accompanied Mark on a trip to the studio. Mark has been recording a new album that we have been talking about for years... We have musical friends over the years that we just consider family- and in turn they helped Mark out by contributing to his album with their musical parts. Keller Williams, Scott from Max Creek, and more folks who Mark has known over so many years of playing music... Colleagues if you will. Well, one particular guest - Mr Tom Constanten was lying down tracks that night  fresh from a gig in DC and on his way back home. He is one of my most favorite paino players and just an all around great person.
TC was the "big music" expense for our wedding because we wanted it to be special. And it was. He played Mountains of the Moon as we walked down the aisle, and All you Need Is Love as we walked back out. During the cocktail hour, he wore 2 different socks. I noticed it and since then, it was one of my favorite wedding memories. I had the original keyboardist from the Grateful Dead at my wedding, and he wore 2 different socks. It was such a great day.

Mark decided to ask him to play on the album recently, because he was at our wedding and the song is inspired by Magnolia Road, that stretch of asphalt connecting Route 70 to 38 that I took for every chemo and doctor appointment. The beautiful road. All the big guns are on that song.

So this past Tuesday TC headed down to the shore here at a friend's home that is basically a giant studio. (Single guy- ultimate man cave). It was the first time seeing anything like live music since my top hat dancing at that farm in PA. JOY. Especially after Satan's Tamoxifen Hoedown the day before. We had beer, and laughed, and talked, a close friend was there as well as TC's friend Ken. TC told stories about LSD in the 60s in the apple juice backstage - resulting in Phil Lesh melting himself to the wall and the whole thing "resembling a Hieronymous Bosch painting". The stories were great. It was the root of all my musical life- that man's playing and his connection with Jerry Garcia.... so intense just being in that house for 4 hours really set the clocks right. It took a few hours to get the song played because TC basically just sat there and played that beautiful music till he got all warmed up and now it's up to Dan & Mark to mix it together to make a pretty awesome cupcake. And wouldn't you know it- he was wearing 2 different colored socks again. I looked down before I took a photo of hima nd Mark and told him that was one of my fondest memories from my wedding. I got all teary- snapped a quick photo and got out of their way.  I am very lucky to have this life and I would never give it up for anything. It's a job in itself being married to a musician. I happily accept.
I tattooed the Grateful Dead's symbols on my body for a reason. They are part of me.

The next morning Mark and I just were beaming from ear to ear. - Permagrin.
It was so amazing to have come through one of the shittiest days of cancer with that night at the end of it.
Thanks, Universe.

My hair is large and in charge and starting to become unruly. I'm starting to resemble my dad's high school picture more and more. I just want it to get past that awkward length.  The radiation burns are healing really awesomely too. There is one area that just started to burn and the feeling isn't pleasant- maybe it's my nerves regrowing.  Nice and fast and nerve feelings are coming back to to some spots inside.
Overall I am feeling better, and different.
Next week I am going to spend 2 nights at the house for the women to go with cancer and recovering from cancer. It'll be a really nice recharge and I have a great vibe about the place. I hope it works.

I am blessed with some amazing friends, and family and music in my life- a life I wouldn't give up for anything.
I am now happy to be able to get back to what i was doing before I worked int he poison building as well. Like album cover art. and designing freelance, and keeping clear away from corporate logos.
Bliss is here. And I'm not budging.

Love*
b

Tamoxifen Nuclear Holocaust Shit Party!!!!

Evil shit this tamoxifen is. "more effective than chemo" they said. "Tylenol has worse side effects" they said.

Now I don't like Tylenol. It gives me a bellyache and makes my ears ring.
I'll take that over full blown nuts and rage any day.

I have a temper- but I'm finding with Tamoxifen- it's worse. and the last thing I want to do is take an anti-depressant. no way.
I am MEAN and I hate it.
My husband takes the brunt- my kids don't.
It's like the biggest stress inside and it is burning to get out.
I'm sure there's some anger leftover from my job loss, the sheer fear of losing my health insurance- life in general.
I didn't think Mary's death would affect me so much when I hadn't even talked to the girl in almost 20 years. It did. It burned in my head and I wondered as I looked at her facebook picture what she was thinking. She didn't smile much for any of her pictures- but there was so much in her eyes.
I could have been her. I might be her. I try not to be her. Someone I knew died from the same thing I had at the same age and that's fucking scary.
I had a good friend a long time ago named Andrea. (Bubblechick). She was 35 when she was diagnosed with cervical cancer- it went undiagnosed until it was too late- but man she fought like he dickens.
An Irish fighter with a heart of gold. She was ok-and wound up getting last rites twice because she wouldn't give up. In the end , she got a respiratory infection in the hospital (same hospital my father passed in) and took a turn for the worse. I came to see her and watched her eyes go back and forth between this and the other side. She looked me right in the eye- but couldn't talk- but I could feel her speak with her eyes-I sat with her friend Nick and him and I just held her hands for what seemed hours.

Andrea, Azalea and I -2003

That day was the last I saw her- she passed later on the next night. At the time- I was 26, had just had Azalea- and her age just seemed so far away. Now I am that age she was and I beat it.
She wanted to beat it - she was all ready to get a tattoo with a butterfly to symbolize cancer survival. The night she died, I sat and drew a butterfly for her- I still have it. I think it's time to get one for her since I got to cross the finish line. Her birthday is Feb 14th.
 I miss her- she was tough shit. and a huge inspiration.
Thinking about her and Mary and how young we are- oof- it hits home. a lot.
I want to live to 110. Be that lady who says fuck you cancer for the rest of her life.
I told my BFF Beth that being ripped apart by a pack of 3 legged pugs as a way to die would be the awesomest for me and to keep the memory alive with a laugh.
The year 2086:
"Did you hear Brianne kicked the bucket! 110 years old! wow"
"Was it old age or did her cancer come back?"
"Neither- she got ripped apart by a pack of three legged rogue pugs"
"She died from....Pugs? No way? I hate to laugh- but man..."
That would be the best. legacy. ever.

So I look at that evil Tamoxifen shit and see my kids and say "down the hatch". I'm doing this for THEM.
I'd battle constant nausea, insomnia, rages and risk uterine cancer to stay alive longer. Sure. Add it to the list of the chemo's side effects and we got a party of drugs and long lasting effects rivaling a Dead show in Vegas. Let's dance.

It's getting to me though- a lot.
The fear, the anxiety, the solitude and lonliness, the undefinite future, the crappy feeling when you see a breastfeeding mom, people staring at you, having hair like Lon Chaney Jr., boobs that look like deformed fried eggs- will they ever look right?... runs though my head all day long. Eventually folks get tired of it and start telling you "they are worried" about you.
People are officially worrying about me. I have arrived.

I WILL get to see my kids get old and have babies.
I WILL live.
I WILL make a point to make each day a pleasant gift.

To keep up these affirmations, I finally surrender to help. I need a third party to help me sort through it. When you have cancer, all these envelopes and mail and shit comes all day long. Forms, Insurance claims, denials, bills, etc. It is in your head too- thoughts are like medical mailings. THEY NEVER GO AWAY.
So I'm gonna get my head shrunk. NO drugs though.
There is a house here on the shore in Ocean Grove specifically meant for getting away, talking to people, get your nails done, cancer massages- and it's all free for any woman with or has beat cancer to just go and relax.
So I'm going. It's only a half hour away- right next to Asbury and I just need to get out of my head and house for a few days- for everyone's sake.
The recent trainwrecks of life have piled up and has started to make me crazy.
So I need to leave.
Just for a little bit.
I think everyone would agree. I would miss the hell out of my kids, and I hope there's not ghosts in the house. I see them!
It's great they have that house- and it's close and by the ocean and just great.
I can't wait.

Tamoxifen causes insomnia too - yay safe Tylenol. (as I pop another oxycodone to relieve the bone and rad burn pain and nagging early lymphedema.... maybe I can sleep finally)
Have a wonderful evening~
xo

ps- after this post , I googled "Tamoxifen rage". Explained. it wasn't just me. lol. Read this!

*breathe*

I learned of the passing of a high school classmate last night. Her name was Mary Caprio. She graduated a year after I did- and because I went to a very small high school- everyone kinda knew every one else. She was one of those girls that did the plays, and sang and was just a good person. I recall her being shy, but once she opened up to you, she was a doll. I liked her a lot.
One of her classmates posted on facebook that she had a 2 year battle with cancer. I hadn't seen her since high school, so I never knew.
This morning, my message as to what kind of cancer she had was replied to.
Breast Cancer.
she was 35 years old.
This beast took another person who didn't deserve it. No body deserves it.
I wish I would have known or kept in touch with her- she lived local too.
*sigh* Rest in peace, sister.

This just made the recent bell ring even stronger, and the fuel to fight more flammable.

I was all charged up this morning to make a post because thoughts are constantly in my head- when they get too loud- they come out here to play.
I was reading a book yesterday that was an excellent perspective on cancer in people my age and younger-excellent book. The author has stage IV cancer. Really- it's an amazing book for anyone who has cancer- young or not. But breast cancer is different. The author didn't lose her hair, or breasts... she had endless health insurance and can afford to buy 400 dollar boots when she gets upset. She had her army of women around her who had cancer too - I can't relate to any of that.
She still has her breasts and looks great. I just had a hard time with the book yesterday because I just feel lost. Nancy- I love you and I don't know where I would be if I didn't have your comments and messages to read through this. You started first- and taught me so much that no doctor or nurse did. Thank you.
I have seen so many of people's true colors come shining through like a neon sign- as the author states.
It's good though- it shows me what people are really like and I don't need to be around them much anymore. The fake friends that disappear once you don't have anything to offer them anymore besides..oh- conversation? Yeah- that's not a big deal.
I chucked that book across the room a few times- The part where she tells the cancer ladies to go out and buy a sexy bra to get in touch with my inner goddess so I can feel ok with sex again made me want to throw up. Lady, I can't even wear a freakin bra right now, let alone anything sexy, or lacy or with underwire.
My "breasts" are still under construction. The cancer side one if fine- just needs a little lift - the other one resembles a fried egg on a flat rock. Nobody gets that visual until they actually see it. It's really noticeable in a bathing suit. It was the side with the hematoma. The swelling really never evened out.
Good grief.
Sexy bras. Really?
I'm shown a few friends and my mother in law and sister in law my 'breasts'. The reactions on their faces is all the same. They don't want to look horrified- but the shock is still very visible. The reassurance then comes out that "they look good and when will they be done making them?"

soon. It's a weird feeling having fleshy lumps stuck to your chest- completely numb- it's like someone sewed a tight bra onto me sometimes. But they are nice and Dr. Patel really did a good job of starting them off really good. I am fortunate.

Today is Monday which means back to making phone calls to everyone for one reason or another.
That's my new job.

Maybe I should write a book as someone young who can't ever breastfeed or have a child again, who has no money, and has no health insurance. I can give great advice on begging strangers wearing ties and suits for help. It's humiliating. The big splurge is a basket full of kale and carrots and beets and maybe some carob squares.
Mind you- I am not bitter. I might sound like it- but there really is no voice out there for younger breast cancer ladies. I love you fabulous cancer survivor author, but you just don't get it on this end. Sorry babe.

The painting and the right arm are getting better because I told them to get better.
There.

the power of suggestion is amazing.

xo
b

when life gets sick and vomits it all back up....

Show me a cancer patient who hasn't had those moments of "I'm so tired of this shit", and I'll show the flying pig I have as a pet in my basement.

Last night was one of those nights.
Azalea was away at her first sleepover party, and I had Melody as Mark worked last night at a gig. We were on our own. I wanted to just paint or draw and my right arm was NOT having it.
The feeling that your arm is being shut in a car door isn't cool. I am having a hard time coming to grips with the fact that I probably lost a good part of my arm's abilities- At this point I am not sure if it will come back 100%- but it defiantly will not be the same.
When creating art makes pain- it hurts. I feel like I got my arm chopped off and waved in my face. Breast cancer can take your arm. Nobody told me that until right before surgery.
It's frustrating to no end.
Anything requiring a right arm is now a challenge. Yes, Nancy- I think it's time to start ambidextrous classes. lol. I told Mark I would try  learning how to paint with my left hand if he would attempt playing the guitar backwards.
I let it build up inside myself so much, because I feel I have no right to keep bitching about dumb shit when others don't even have arms.
But when it builds up- I feel crappy about letting it out- I have a hard time expressing my real feelings because my whole life I was always told that someone has it worse. I've seen it. So I am conditioned to keep it down.
It turns into me not speaking to my mom, snapping at my husband and kids, and turning inside myself to just cry and wallow in that poisonous self pity a little. I can physically feel it inside me. and I hate it so much.
I wish I weren't so fucking angry at my boss, and at cancer for ruining my life. But I am.

Last night , Mark came in about 11. Not being able to sleep, I needed to just talk to him. and we did and it was great. And I realize that I am much better off getting this cancer myself than seeing anyone else in my family go through it. I couldn't deal with one of my kids being sick or my husband.
I woke up this morning feeling much lighter.... My radiation burns are healing really awesomely!
Then I pour my coffee and get an email saying a painting I recently shipped arrived badly damaged. Can I get a fucking break?

Then I watched a Soul Pancake youtube of a little boy named Joel in his last days with brain and spinal tumors and I shut up again.
Someone has it worse. Some little boy's parents are freaking out right now.

It's a horrible cycle of feeling so incredibly selfish complaining when someone else does have it worse, but I feel like I'm degrading my own self by not honoring that my body needs healing. Or someone to talk to.
I feel like it's my fault sometimes, and feeling like that is horrible. Overall I just feel like I have no business feeling this way at all. Like I gotta keep up that "fight" attitude and if I dare complain, then who the fuck am I? How dare I when I 'got it so good"? I survived this shit when others didn't, or have to live with it for the rest of their lives.
I feel like if I feel anything good about it- I am gloating. I regret my bell video being on facebook when I have friends whose cancer will never go away. Ugh. this is my head 24-7.
It's a cycle that is part Virgo, half Catholic School, and part middle child syndrome. It's a cancer in itself.

Everyone just assumes everything is all better when treatment ends. I am guilty of it myself.  It isn't. And I'm doing my best to be ok with that.

.... till tomorrow....
b

back to reality

the party is ending....

"it'll get worse before it gets better".
Oh hell YES- this morning woke me up with a burning chest pain probably my lung dealing with rad burns too. If my outside looks this bad, I would hate to see what my insides look like.

It's uncomfortable. At least I am sleeping more continuous hours than I was. Still up at around 4:30-5am. Which is a nice 2 hours before children wake up so I can have coffee, blog, watch TV, get ready for the day. Lord knows I'm done by 2.
Just gotta get through his healing process and get on.
STILL waiting on OSHA, and making do with all the phone calls you have to make when you lose your health insurance. Dr. Patel's receptionist and I have been becoming friends- I called her to tell her the good news that I got fired and lost my insurance- and she had never had that happen to a patient ever.

In NJ- thankfully under this new law- I can get low cost health insurance through the state with my pre-existing condition. The catch is I have to be WITHOUT health insurance for 6 months. So I have to go that route right now and paying cash for the followups until coverage kicks back in in July hopefully.

Fun times.

Every little thing is gonna be all right. I'm not worried about money so much as my health. the next 6 months will be fun, I'm sure.

A LOT of paperwork. and phone calls. and just a tad bit of stress.
I just wish these OSHA results would hurry up- I saw one case similar that took 6 months. But they didn't have half the chemicals and solvents we did. Our shop was BAD.
Methylene Chloride is used in stripped paint and furniture and bathtub refinishing too. OSHA got one company for allowing their bathtub guys to use it- he and a whole mess of people died from the fumes.
It's also the same chemical that they soak coffee beans in to decaffeinate them.
The South Korean Government even recognizes methyelene chloride as a cause for breast cancer. When my own government and even MEDICAL community couldn't care less.
Methylene chloride was just the small part of the puzzle of a chemical soup.
I just hope they find it all. Still so pissed. That's going to be an anger I need to work out for a long time.

In other news, we are supposed to be getting this huge blizzard today- which would be nice. It keeps the man home when it snows bad. I love when our family is snowed in. Haven't experienced it yet with an eternally cranky 2 and a half year old yet though. It's usually spent making something of some kind, then going stir crazy. I have collected pieces of boardwalk from the beach post Sandy and I'm going to paint them I think. It's small enough canvas for my arm- and doesn't hurt it too bad.
I gotta get back into drawing and stuff again or I am going to go CRAZY. Not being able to tie dye hurts enough. I drew and painted a poster for a friend's band recently- the date of the show is his 1 year anniversary of cancer remission, so I busted out a blue Ganesh just for him. Remover of Obstacles. I figured I'd share mine. I have a big blue one tattooed on my back that I just love. :)
So this is my first completed project with the new arm. I'm also working on Mark's new album's cover- which is forever for me to complete. I really can't draw like this for longer than a hour at a time- I hope it's building back all the mechanisms that were damaged.

The arm is still behaving- I had a bad day yesterday between Melody kicking me square int he arm as I changed her diaper- and it started to swell and just be aggravated. All that scar tissue in there just got burned too so I just imagine a smoking earth inside of me- like a tiny hell. Poor armpit. Cancer came to town and we had to literally bomb the area. I have a little Dresden, Germany from 1945 inside me. My poor armpit never knew what hit it.

I can't even feel most of it too- but I can feel it- it's so weird. It itches- but you can't feel when you scratch it. My right arm's nerves and nodes and contents from the elbow up were removed through my nipple. ISN'T THAT NUTS?! Typing this is aggravating it actually. So I gotta cool it on the jabber before I hurt myself- lol.
Gotta save the arm for art. and for snowballs with the kids....arggggh!!!! (gently)

stay warm, loves.


xo
b

The first day of a new life

Hell yeah I did.
I love this song. Before I was diagnosed, I officially had this as the song to be played at my funeral.
Now I hope I get so old, that nobody will remember that I want this song at my funeral. I'll have to write it down because I'd rather be drawn apart by dogs than have the final curtain be because of cancer.
Fuck that. No way.

I know I can't control my fate, but I can visualize it.

So what did I do on this first day of freedom?
I woke up drenched in sweat at 2am, finally fell back asleep at 4am- then woke back up after 2.5 year old kneed me in my back and bonked me in the head with a sippy cup. Meandered around- felt like shit - the arm burned a lot- and my dumb ass completely forgot about a thing at Azie's school. I was supposed to join her for a math game where all the parents come out and see and play the math curriculum for an hour today. and I freaking spaced out. I was so wrapped up in my arm and sleep I just forgot. I felt so bad, I was crying when she came home from school. The big kid she is- I know she was hurt- I apologized up and down. She hopefully understands.
My arm really is in bad shape- a nice big crop of blisters showed up today- now I see why they said "It'll get worse before it gets better".
So I was the world's most horrible parent, and Sweaty McBlisters today.
Hot flashes, with a burned armpit is kinda gross. and uncomfortable. and weird stingy. At least the bad smell went away.
I switched up a bit from the saffron seed- I don't think it was working very well at this point in time.
I did get some nice relief from a baby diaper rash herbal spray Melody uses. It's got aloe and tea tree oil in it and it's super gentle.- I put it in the fridge- the cooling is just the best.
Ahh.
The lymphedema is kicking up a bit too. Ouch.

all in all- I'm out of sorts. This permanent chest pain is going on and off- Just feeling lumpy and blah. It'll probably be a year before I feel normal again- but who knows- I have long forgotten what normal actually feels like.

I just am so happy I can finally be home with my kids again. Like it's supposed to be.

I'm finding good ways to get around hospital bills- and I'm getting some health insurance back as soon as I can so hopefully all that paperwork and stuff will be smooth. I have had enough bumps in my road.
Having really nice and understanding doctors helps too.
So if I was a nice obedient & compliant worker bee- I'd be back in that building right now- How the fuck would I have worked with my arm like this and feeling like this? Who the fuck demands that from their workers? I just cannot believe this guy.
No OSHA report yet- which means it's going to be a real doozy. I found a delightful screen printing supply website where in big red letters, right on their front page at the bottom has OSHA REQUIRED under  the safety products- including a floor ventilator unit. WTF??? What magical things, these OSHA required items.  One chemical was supposed to be watched carefully, given medical surveillance for, and documented for injuries. Guess which one I was around the most in direct contact. That stuff would eat through the rubber gloves. Little did I realize it went into my skin- and stayed there. Real nice when you roll your own cigarettes at the time too. Methylene Chloride is perfectly safe. No big deal. No need to be alarmed. ITS PERFECTLY SAFE. STOP READING LABELS, BRIANNE. So perfectly safe it has 600 pages of cancer warnings written on by the EPA.
Like the benzene, acetone, hexane, toluene, PVC, formaldehyde and other fun stuff's fumes in an unventilated building all day long too. No big deal.
It just makes me angry. So angry. I hate to keep harping on it- but how do you do that to a human being?
The sheer ignorance is astounding.
Other places OSHA visited like my work - with the same chemicals and problems- bring hefty fines. Especially when someone gets sick.

I just don't see how someone can just be that careless. And willfully negligent.


Ugh.
Some of these OSHA things take months- bad ones take months. This is going to be a real bad one and I would suppose this probably makes the news if it's as big as I think it'll be - judging from the past reports and violations I have read from other similar jerk bosses who don't think twice about their employees being holed up in an unventilated box with poisonous air...

This is my next fight.

In the meantime- healing. It's finally here.



yay!

radiation - day 28. TREATMENT ENDS

I think this blog is a great book so far. One with an unexpected twist.
Today marks the end.
very few blog post here were made when I wasn't in treatment.... the first ones were totally naive. I'm a little embarrassed about it- but who knew?
Now I am wiser.
been through the rounds. Fresh out of the stalls.
I still have my pains, my burns- freshness. Wisdom will grow and calcify.
I just cry when it hits me that after 9 months, I'm done. In the time some people create humans, I saved one.
My doctors did it too- but I have known since May 10th- when I saw that photo of Mickey Mantle on the wall - that my dad was gonna be with me and that everything was gonna be ok.
Ok.

I believe and I feel that even in my personal experience- that we walk with our guides. We all have help- even the most evil of us. It's our choice to listen.
But we have guides. They are there. I don't care if you are flaming atheists...they are fucking THERE!!!!

I embraced mine as best as I could- I embraced the formless prayers, the fortune I had to be surrounded by such awesomness of people and spirit- and I felt it- I always felt it- and I will always feel it - in my heart and forever.
This is just the beginning.
keep off the grass, cancer.

Love you, Nancy..... !! 2013!

more to be added later*
xo

b

radiation-day 27

Tomorrow is my last treatment.
This song has been in my head all day.
... Not technically free from treatments just yet- but definitely free from bullshit.

As I sit here on this eve of my last treatment- I have a nasty oozing burn, a giant square of pain. A sense of completeness- at the end of my rope- exhaustion, really tired of it all....so happy to put the last 9 months finally behind me.
And 5 years.
I took a day off from law, checking to see if osha sent me the official report yet, and medical questions to just lie down. I am spent.
I had the wind knocked out of me through all these damn treatments... I am at a point where I'm just done. I have no physical energy left. I can't pick up my kid, let alone stand still without the flaming evil of radiation reminding me that it's there.
TOMORROW IT ENDS.
all of it.
I'm missing my co-workers today since I really enjoyed working with them and they were a real support system for me when I first got sick. I'll probably never see them again.
I still am dumbfounded how someone just couldn't own the fact they poison their employees. Selfishness.
My life now is focused on my kids first. My husband. Our life as a family.
Then my art. Then everything else.
We have been through enough where I think we should just go back to what matters most.
once and for all.

Tomorrow- we face the final curtain.

radiation - days 25 & 26

Still waiting on that nasty OSHA report.

It makes me angrier every day that I feel more like shit because of this treatment- and I didn't have to go through this. I wasn't supposed to be exposed to all those chemicals- I was supposed to be respected enough to be looked after at my workplace.
I feel dumb in a way for staying so long. But how would I have known? They didn't follow any sort of any safety rule at all. Like providing employees with the big book of company chemical ingredients.
Had I known about the benzene alone that was being sprayed all over- I wouldn't have worked there. No way.
So I sit here, on my official second day of being unemployed and uninsured--- a boss who got so upset I called him out on safety (because who the fuck needs a safe workplace?)- and was irritated as it was with the length of my disability- I just want to hit him.
Hard. I can't even do that with my arm. He knows we're broke. I cannot afford the COBRA payments- so thankfully my radiation is over and it's mostly followups from here on out. NJ will give me insurance if I can go 6 months without. Which is scary- but what choice do I have? I already found out my insurance isn't covering my radiation anyway so just add it to the giant pile of medical bills. 23,000 dollars for half a run of rads. YO. who can afford that??  The blue collar jerk who has to slave in a warehouse full of chemicals for 16.50 an hour whose priorities are feeding her kids and paying rent? It's close to a quarter of a million dollars to treat cancer. My hospitals do have charity care thankfully so we can work out a deal- it'll all take care of itself. I trust the Universe. It's scary right now though. It's like one of those dreams where you are driving down a hill like the kind in San Francisco and the brakes fail. eek. I trust I'll be ok. I hope my doctors can be patient with me. hah hah. get it? I am filing for social security disability since my right arm is shit right now and any sort of work I did before will not be ideal for the future. And it was all manual labor. and Desk work, but it was artwork and my wrist nerves suck at artwork right now. getting it better though. But it'll never be the same.

For my boss- it was just about money. I hate money.

I hate to think of the other employees of other businesses like this one out there- and there are many... Some even do it in their house with their kids sleeping upstairs. Ventilation is so key. Good grief the whole ignorance of the industry to these chemicals is astounding. or maybe my boss was one of the rare ones who didn't care. I hope not many else are like that.
It makes me sick to think of all those years I breathed all that in....how many other women are out there like me? Drycleaners? We used the same chemical they did.
One of the radiation techs...her aunt worked as a dry cleaner and died of breast cancer.
wtf?
I never got my clothes drycleaned. I never took birth control pills. I wasn't around ionic radiation. I didn't have vodka for breakfast. I ate organic food (no pesticides). I even smoked organic cigarettes. I even quit smoking when I got pregnant! I hula hooped, I danced a lot, breastfed my kids, I loved music and the outside....... I stayed so freaking healthy for what?
To go and be around the equivalent of smoking 8 packs of cigarettes every day at work.
But nope- that didn't give me cancer. No way.

Shit needs to change. SHIT NEEDS TO CHANGE!!

My pain makes me angry. This radiation is painful.
and I was supposed to work through this? My armpit feels like it's being scraped out with a flaming hot rusty jagged spoon. I move it a little, and the delicate skin rips and it starts to ooze. it's really gross. The nurses and Dr. D the radiation oncologist said it looked nasty and gave me an Rx for Silvadene. I looked up the ingredients and it's got methyl paraben in it. An endocrine disruptor. LOL no thanks. Good thing I'm an amateur chemist these days. Polymers and covalent bonds are coming out my ears. I have done so much research of the chemically induced carboxyhemoglobin levels and hepatic activities, I could be an endocrinologist. I know my shit.
My saffron seed is working well. But it still hurts. I feel like I got that costco rotisserie chicken again inside my armpit. Like a big armpit oven with flames like in those old burger king commercials.
Owie.

radiation burns

I had it photographed for posterities sake. During the phoographing, I actually covered my 'breasts'. lol. what for- they aren't really breasts really, and I have no nipples so what am I covering? The instinct is funny. I wonder if I could technically go topless, although it woudl be walking horror movie between the stuffed flesh and fresh scarring. On the other hand- I have a rather large scar across my stomach, which I have no problem displaying in a 2 piece over the summer. I think the scar is badass. a LIFE tattoo. I don't think I am going to cover it up. It makes a smiley face too. Who knows. Maybe I will get it inked over. Not sure yet.

My oncologist also told me that I would have chest pain of some kind of the rest of my life. Yay. If it comes and goes, it's normal. Any pain that stays and is constant for 24 hours a day, 7 days a week could be cancer coming back and that's when I need to call. It's a jarring reality. I had a very aggressive tumor.

Who cares, though- I won't be around that stupid building anymore. It was worth my job and insurance to be rid of that place.

So my cancer won't come back since I won't be around that garbage any more.... That's MY affirmation.

Almost done. It hurts. So glad to be unemployed. It feels good not having the pressure of needing to perform when you feel your shittiest. I was supposed to go back to work yesterday. No way I would have been able to go and lift shit, sit at a desk, push, pull, put pressure on---- I'm glad I am gone. I am going to enjoy this time with my kids, my husband who also works at home- and life. and Breathing and healing like I should be. It's my time now. I need to breathe through this next legal struggle of fighting for safe workplaces..... but for now we concentrate on the armpit. The ol' Shitshow has now become the Rotisserie. Scar tissue and broken nerves cooked fresh daily. At least I'm seasoned with saffron.

xo

love*
b

radiation days 23 & 24

Allllllllllllmost there.

whoa.
And today hit me like a tons of bricks emotion wise and energy.

I seriously need a vacation. or just to leave for a while.
I can't say if it's the general cancer, the stress of treatment, the unsupportiveness of family, the treatment itself or just the stars. I am kaput.
Between fights with my mom, this lawsuit's work, the work to scramble to make some cash for the last minute leap of faith I took, just everything- it hit me.

I could tell it all building up when I started to argue with my mom and dumb shit made me so angry I just snapped. I also have not slept or eaten regularly for weeks. So that could be it- or the hormones, or the fact that i just need to buck up and not react to my mothers hurt.
It is so hard- and I doubt she even knows what she is saying- but oof. We just don't get along. I'm mean, she's mean- both of us are just mean to each other- and I hate that.

I can feel stress physically inside me. It bubbles and rises in my ears. I can hear my heartbeat.
While "eliminating stress" can be easy for some- it ain't so easy with 2 children and a mom who just doesn't care. Eliminating stress means going away from cancer. getting fuck out of the house for a change. for a week. I have to be a mom, wife, daughter, cancer survivor, radiated patient, uninsured and unemployed. it's hard sometimes. It's tough as shit fighting for everything the whole way up. It's also something I try not to complain about- but fuck it's hard sometimes.
*ergh*
I have to watch my reactions and not flip out anymore. It should be easy since my mom and I probably won't be speaking for a while.
as for work-
The fact that I got pissed on because I called OSHA actually makes me feel good. It's actually doing that Eat Pray Love thing- only I am not Julia Roberts and I called out my boss instead of calling out myself. Unless I just did above. Anyway--- I am going to do what i need to do for my family- and kick ass at it.

making stuff and pushing through a horribly wrecked arm is what I have to do. I am not satisfied with it's limitations but I do have to respect them. But it ain't gonna define me.
So that's what I have to do. Slowly. but surely.

No news yet on OSHA, or a call back from the lawyer.

Oncologist says he couldn't pinpoint the cancer to a certain toxin, but said toxins could cause cancer- so it's a wash- I didn't expect him to go "Oh you are so right" - but he was open to listening and took all the info on the chemicals with OSHA rules. And apparently studies don't count because they cause cancer. In rats. Not people.
ugh.
But plenty of people in the printing industry get major incidences of cancer from solvents. used without protection or ventilation - with giant cancer labels on it- but no--- that didn't cause your cancer...
I question some peoples' ability to question. Not asking why is dangerous I think.
Doesn't matter. I'm still going to push this issue.

b

radiation - day 22

--- Just another Monday.
Another week of radiation- the last of the 5 days in a row radiations. After next tuesday- no more treatments.
No more.
I'm not used to this "no treatments". What is this magical realm?

It's a realm where you are out and about- living the dream as someone who beat the beast.
Granted I probably still have 2 more surgeries at least to fix these weird looking mounds of flesh on my chest, but as far as treating it all- it'll  be...done finally.

And I can recover unemployed with a little tiny cushion of comfort to relax and recover a little bit. I needed it. I needed so bad to get back to my bliss. Money is such a heavy chain.
When you are providing for 2 kids- it gets heavier.
Feeling like shit that you can't just up and Eat Pray Love like that lady did and go ride bikes in India and all over up in the ashrams.What kind of freaky artist am I? No more.
I took a major risk standing up- and I was scared. I was more scared of that than hauling my butt into a chemo chair.
I held that fear inside me that wouldn't allow myself to be happy for the sake of someone else. Really.
As much as I told myself I loved that job, I did. I really did- but I longed very much for that old freedom back to vend festivals and just pick up and go whenever we wanted. even with a child.
Well I sure got my wish, didn't I?
I blogged up and down in the past about not being afraid- being afraid.... when I was lying to myself. I knew it too. It killed me to admit that what I was working with was horrible for me and I wasn't going to take it anymore. Bye bye nice paycheck. Bye bye paid benefits. The worth they are being gone right now is worth more than any money or all the treasures of the world combined.
I conquered natural childbirth twice, had my netheregions cut and sewn back and torn. I conquered cancer, giving my breasts and armpit contents to science and in the name of saving my life. I stood up to a puppetmaster and cut those fucking strings. Well he actually cut them for me, but I cut them with a letter to OSHA. (Who by the way is still inspecting).
Nothing can hurt me anymore. I got a family stronger than steel- and that's ALL I need.
That's all anyone needs. The Beatles were fucking RIGHT!

Sucks it had to happen this way- but I feel so strong inside for what i stood for. And money is not a heavy chain. It's just freaking paper.
My boss delightfully sent me the continuation of coverage form- so I could kiss his ass and keep my health insurance because he knows I need it. ugh.
Lost my dental though. I can't squeeze all that work in either since you can't see the dentist during radiation. shit.
But who cares. My missing tooth will stay missing for now.
what's teeth and money anyway, right? lol


This sense of peace is over me now I haven't felt in a long time. The stress of not having to worry about my health going into a toxic building anymore.... the prospect of living out my life on my own terms- for my kids like it should be.
Granted, my physical abilities won't allow me to do most of the things I would love- but I can work at things to get them better. and stronger.
My head is sure screwed on straight.
Chemo side effects are still in full force- Neuropathy. Bone pain. ugh. Nausea too.
The radiation burns are there- but doing great because of the saffron seed I was sent. Good stuff! The techs really like the way my skin looks. I've been using it since Friday - although the skin is a little raw- it's alleviating a lot of the burn. and itching.

Still chugging along.... la la la....

radiation - days 19-20-21

I know I'm speaking to a very small audience here, but it's ok. It's kind of weird having to go underground this way- but it has to be done and nobody reading this blog isn't trusted.

Side effects have reared their ugly head where the burns have finally come to the skin's surface- red patchy scaly - but I'm keeping it at bay with a mess of goos and creams and nice smelling things. We're doing ok. The lymphedema is actually getting a lot better too.

Been real tired- I'm at the point of it just being enough already- I was talking to Mark the other night - this man has been my rock and passenger through this nutso ride. God bless that man.
I explained to him that I don't think there can be anything else they can do to me. I've been poisoned, cut open and burned.
For cancer.

This is how we treat things we don't understand-
All this research and money and pink ribbons- for what? This cancer accounts for a third of all cancer cases.
And nobody knows why we all get breast cancer. Not after all the billions of dollars spent and pink Kitchenaids sold. After all these years?

Duh. All that money raised and we still don't know is bullshit.
I have done more reading and research on breast cancer being caused by environment and the lack of accurate studies out there is APPALLING.
Yes- it's great to get the drugs that help. Lots of big breakthroughs there.  But finding out WHY seems to be low on the priority lists of people.
Because the answer to the "Why" usually involves the drug companies, or the pesticides the drug companies make, or the plastics we use everywhere- all of those are commodities. The endocrine disrupting chemicals I believe caused my cancer were rampant at my workplace- being vaporized all day long with no ventilation. If these things are terrible- why are they being used so carelessly?
And I hate seeing the same chemicals I was around that cleaned screens and ink also being listed as food ingredients. Shit is crazy.

I can be that person that says "everything causes cancer" - because - it does. But in high volumes at careless levels - this goes on everywhere in every industry.
It seems the only way to escape all of it is homestead and make all your own food and clothing.
Which duh- is unrealistic.
I started making my own laundry soap, my own breakfast cereal, pasta, breads, salads. Stuff we can do ourselves, we do. My veggie garden should be starting up again soon too- with a better outcome. Chickens I'm sure will be down the line at some point.

Point is- I have read more literature about the epidemiology of breast cancer cells that I ever cared to in the last few weeks. Specifically how chemcials and hormones affect our delicate balances- and chemicals violently tip those scales. Violently.
Women who grew up near farms and agriculture have the highest incidence of breast cancer, but our non-organic food is safe?
The women working in the places that can food- (chemicals line cans) - high incidences of breast cancer. But canned food is everywhere.
Women working with plastics. High incidences of breast cancer. Plastics are everywhere.

I feel like I was the lab rat that showed that high levels of crap could affect you. My hormones raged out so bad after I started working there- I never knew the connection. Painful periods. Heavy bleeding.

I spoke with a lawyer and I have to sit down with my oncologist and Phyllis and hash this all out and let them know the entire scope of what i was around. Its hard to explain to someone on the outside how bad it really was. But I think with the 300+ pages of clear evidence of endocrine disruptors being inhaled all day long caused breast cancer, they would agree. So I am pleading my case to them. I have confidence in their intelligence to comprehend what I am trying to prove. I need them to substantiate my findings to proceed.

I also found a website last night of different printers talking in a message board forum- I saw a thread titled "Show us your shop"- or something to that effect.
All the photos - and I man ALL- showed spotless shops you could have eaten off the floors.
Nothing like what i worked in at ALL. and ventilation all over the place.

One guy worked in a shop like mine- posted photos (but even THEY had ventilation) - and he got accosted for the mess. I was not supposed to be around all that solvent soaked lint either. It was everywhere.
I was in a bad place. And Methylene Chloride is serious business. A simple google search for "Methylene Chloride and Breast Cancer" has some surprising results. But I was labeled paranoid for being concerned.
And not one person who was a professional ever said anything about the ventilation (or severe lack therof) - to us at least.

OSHA inspection is still going on last I checked and it was going on 7 days. They will come back with an abhorrant report.
Get mad at me, coworkers. Boss. I have every right to do what I did because I got CANCER. I ruined your business, boo-hoo. You ruined my life with your carelessness. Not sure how anyone could stand behind or support my boss now with his decision.
I just wish --- wish I would have known all of this before I lost my breasts and right arm for a buck.

I am not one to sit back quietly. When this comes to light- shit is going to CHANGE- for the chemicals women have to be around- my old industry- and bosses like mine who put their workers in harms way won't be allowed to do so anymore. and you will hear me from the rooftops. I'll be more annoying that Snooki.
Hear me roar.
Mama Bear is ready to go.
Don't mess with a DeLorme.


more added::: 4:40 PM.
I was painting today- like real painting! watercolors, pens..... after about  3 hours of drawing- this arm starts to swell up again. and it hurrrrt. My art is messed with.... I cannot even draw a simple line without the nerves acting up. You mess with my art- you really mess with me, now.
shit is war.

Radiation - days 17&18

Even days are Bolus Days- when they put that wet thing on top of your radiation area. Today was number 18 of 28. A Bolus day.

Some new developments since the weekend... After I informed my boss that I would need more time since I am still in treatment and recovering from a nasty arm - as well as expressing concern over workplace chemicals, I was informed by the company that my position is no longer being held for me. And my insurance gets canceled along with my employment termination as of Januray 31, 2013.

So I was fired for needing more time off, and it's really convenient it happens as OSHA starts their inspection.
What is the matter,boss? Worried they might find something?

A prompt call to the lawyer waiting for the OSHA report - he calls me back and instantly puts me on trial. I am not one who takes well to being yelled at - but I liked the guy's attitude. Someone who bites someone's head off is what I need because I just can't do this by myself.

I meet with him Thursday.

I'm not a fan of being told to sit down and shut up.

I just beat cancer, no lawyer is going to put fear into me....as will no boss.

I'm smart, and was that lady who read all the ingredients. Good thing I was paying attention. And I was the nerd mom for caring. Win for the nerds!

Body wise I am tired. Tired overall from radiation but now the burns start to settle in- I can feel them coming closer.
My skin is purply red and angry looking between the burn and the holes where the drains were.
Ugh.
My determination in this pending matter will not fade.
It is a travesty that women have to work in these conditions, being bullied by bosses, and corporations when they get sick.

So you fire the woman in treatment for cancer, during disability. Canceling insurance.
Real cool.

I see how it is.
Let's ROCK.

(weekend) (tired beyond belief!)

Weekends are "days off", but I figured I'd blog because again- I spoke too soon.

I said I couldn't sleep.
HA.
Today the radiation train hit me like a ton of giant 1 ton bricks-
I woke up and just had to go back to bed. Here it is 4pm and I just can't do much besides sit up for a few minutes - then I lose all steam and have to lie down again.

This is like the first rounds of AC- Just soooooooo tired.

And my boss incidentally wanted me to work through this. Is he crazy?

Sorry- this one couldn't work through it- this is just another wringer the body goes through. Serious shit too.
The more I think about him being so ready for me to waltz back in after 12 weeks, the angrier I get.

I look 10 years older when i look in the mirror- but I'm trying to justify that with recent lack of sleep.
My eyebrows that I happily tweezed once they grew in in their bushy glory aren't growing back, and my hair's slowed down a bit. I'm a half inch away from having Ryan Seacrest's hair stylist.

Today I just couldn't deal with the kids in the house, I was so exhausted I had to ask my mom to take them. I haven't had to do that for a while. Melody is just in a phase where she is a terrible two with screaming and disobeying and I try to keep it together and discipline, but I can't today. I just can't. I give up for 24 hours because it's too much energy and I'm not 100% here. It's the frustrating part of being a mom with cancer. You can't give yourself fully to your kids.
It's sad sometimes. But I keep going the best I do.

I am so calmed by the fact that I don't have to go back to work- it was a place I wish i didn't have to go to for a long time- I prayed to win the lotto so I could go back to being that stay at home mom again. Nowadays, money is just paper, and my kids mean more to me than any stupid job that puts their employees in harm's way directly.
And I feel calmed that this blog isn't public anymore and I can say what I feel.
Not having that stress in my life is going to be so good for me...

If anyone wishes to come over here, I just need an email address to invite you....
xo
b

radiation - day13,14,15,16

Been busy-This blog has been made private because of some serious revelations and truth that needs to be brought to light- not just for my cancer- but for other women like me as well.

Something in the stars decided to finally grant me all the side effects I never received in full force during chemo. Neuropathy, bone pain, headaches..... and the lymphedema is creeping up slowly too.
Doing my best to stay ahead of it.

I was never a nap person- you know I'm tired if I'm napping during the day.
I wasn't really able to nap too too much during this crazy train- I did though.... but now- it's all the time naptime. Only I can't sleep.
Whatever radiation is doing to the scar tissue in my arm, and chest - it ain't pretty- it's just ucky. and uncomfortable.
Unexplained sharp stabs come out of nowhere, at random moments. It's my nerves knitting back together.
And the issue at hand.....work.
....
I cannot go back to any work because I was exposed to chemicals.
There- I admitted it.
I sat in a virtual fishbowl of solvent fumes, plastic fumes, horrible chemicals being sprayed around me with no regard and no ventilation.
I realized something wasn't right when I watched Pink Ribbons Inc., a documentary about the pinkwashing of society and how breast cancer is marketed and portrayed in its pretty pinkness. During the course of the documentary, the tie between plastics and breast cancer were cited, in a Canadian worksite where plastics were melted and workers were breathing them in- it actived their estrogen levels to crazy amounts, causing estrogen positive breast cancers. It struck me- that I too- with estrogen positive breast cancer, had been surrounded by fumes of estrogenic chemicals designed to disrupt the endocrine system, with no ventilation at work for 5 years, 40 hours a week. Most print shops have adequate ventilation. And safety protcols with the chemicals they work with (which is a bevy of carcinogens, enough to make your head spin).
Not mine.
Nobody cared, and the crap just went on. The industry doesn't care either. The toxic process of making a tshirt from fabric to printing is HORRIBLE for the environment. and it's an industry where standards are lowered.
Ventilation is standard.
not having it is borderline criminal.
And even more evil when a pregnant woman works in the said place and no care is taken either.


The things we do for money.  A 4 dollar an hour raise and paid medical benefits after your first 8 months , with a wholesale connection ot getting your art printed is a hard thing to walk away from. But if I had known the full spectrum of what I was exposed to and what I deserved as a basic human right of safety in the workplace, I would have left much earlier. Maybe.
It was so nice to have steady paychecks once again, I had the great boss who took care of his employees- Yet now that I step back and take a look- I see he didn't care. He didn't take the time to look up what might be a healthier thing to do for his workers, currently using an open door as ventilation. Sometimes.

Something isn't right. I have been told by my doctor that I shouldn't go back into that building- and how could I?
How could I work for someone who made their surrogate mother sign a contract to not be exposed to high chemical contents as they carried their baby, and didn't give a shit about his own pregnant employee?

Done.

I went through this for t-shirts. Other people go through this for tshirts. Not just breast cancer either.

As of this blog post - OSHA is following up on the official complaint, and I call my lawyer back when the reports come back.
This is a scary thing,but I hope this can help my industry move into a place where it isn't so blatantly hypocritical.

I am exhausted through this- but I refuse to let anyone get hurt anymore and I'm making sure safety gets put in place for any other people working in shops without adequate ventilations like they are required to have.
....

stay tuned kids. it's gonna be a wild ride.

radiation -day12

16 more to go!
Today kicks off radiations 12-16. And we just keep getting hotter.
The burning inside feeling I'm getting used to.
The arm isn't behaving either- (Nancy I am doing the wrist to armpit thing  and exercises! lol)- it gets a little better with the stretching and massage, but it's still shot. And it's visibly puffy.
boo.
no puffy arms.
Call me Puff Mommy.

Just another day in paradise with my personal summers keeping me warm in this wintry weather. Chugging along and doing what I do best. Living forward.
I might be in pain, miserably uncomfortable at times, and frustrated with every day limitations, but I'm happy.
I'm still here. I am grateful for every morning. Every rotten day, every ray of sunshine.
I am still here.
That's the most important part.
and love. Can't forget the love....

xo
b

radiations - days10&11

Greetings and good morning~*
The hits on this blog doubled overnight in the last 3 days- wth?
Nice to have all of you here.... Thanks for being patient--- as you can see from my waning frequency- once again another treatment is kickin' my ass.
Had my first 5 days straight of rads, and it was interesting to see the wonder and glory of a 5 day run.
I'm a little worried about the arm that seems to have gotten a little funkier lately.... I was doing good, but I'm suspecting radiation to the armpit + scar tissue probably isn't the most exciting party right now. It hurts.
And I'm starting to be worried a little bit because even the smallest tasks are starting to be a bit difficult, all due to the arm and impending doom of the L word. Lymphedema.
Since I am without any  lymph nodes in that right arm, there is a tendency of it to get extremely swollen and painful due to the inability for lymphatic fluid to drain properly throughout the arm. So it collects in the bum spot- causes a whole mess of pain- and then I am forced to wear these sleeves and gloves that compress the arm. Your arm swells up like a giant sausage. It could come on immediately or even years later- no one knows. So I live in the shadow of this right arm- a goodbye present from Armpit Shitshow's City Council.
It is constantly an achy arm, either dull or sharp, and it feels like I literally have tight cords inside my armpit that don't stretch all the way in place of tendons. Too much pushing and it starts to swell up.
Washing dishes, folding laundry, carrying my child- all this aggravates my arm. Typing even aggravates it. It is really frustrating and downright scary. Again- I am so glad I did not choose to play music with my hands as a profession. I do use my hands to draw and paint though and that's been difficult lately from the nerve damage that occurred. I have lost something so precious to my life at this point in time and I can only pray that i get it back. I am on the edge of possibly ruining my arm every day. I don't know the limit. But it's been pushed lately and it is royally annoying. and painful.

My right arm. My baby right arm, my lifelong best friend to carry out my vision- fucking broken.

better days of living and art before cancer....my right arm in its glory days.

I'm really pissed that this shit had to happen on my good side. My art side.
Not even being able to make art now or possibly never again without problem is a very real possibility.
I suppose I should start to find a new way to adapt to my arm's limitations, maybe I should move on to the subject matter of one color canvases, start wearing blue sunglasses and berets in the evening, and name my works with nouns and numbers like "Train Station Number 2".
Pedantic drawings of females and fish and waves and swirlies are a thing of the past! I'm going YOKO.

Not really. But it was a great thought.

All I know is I am left with limited movement, and on the edge of a nasty painful condition if I push it too much.
Just missing my art a whole lot today. Going to see if I can find a new groove slowly...one that won't possibly cause permanent damage down the line.

I could punch a wall right now but even that would hurt it bad.

All that being said- this isn't bringing me down at all- it is just one of the many pains in the ass cancer causes. There's a new landscape to my health every week- Just trying to keep it pointed in a positive direction.  Radiation makes you sooooooooooooooo tired. Tired to where you just hit a wall at 1pm. or at 5.
The side effects of the radiation are battling the side effects of Tamoxifen. Insomnia is being crushed by intense fatigue and I am actually sleeping. Third night in a row and I am dreaming again!
I like that. That's the best part about radiation. The being tired all the time. I welcome it.

The feeling like you are one of those rotisserie chickens at Costco is also a radiation side effect from you literally being microwaved and cooked in the so many words from the inside out. It is the strangest feeling of being burned inside, but most of you inside is completely numb from surgery- so maybe it's a good thing I can't feel all of this radiation. It sucks though. I can describe it as the feeling like your armpit being stuck down with velcro made of flesh- the feeling when you pull it apart is just what it feels like inside. The radiation is even going through my back- my chicken wing is all burny inside too. If that makes any sense?


So I am sleeping and dreaming and praying my arm comes back to 100%..... this is a very long and crazy road of healing that's going to be forever.

breast cancer is the gift that keeps on giving. ugh.

Today is a gorgeous day of almost 60 degrees, I'm going to take a drive with Mark and the kids to Mantoloking to see the houses and how they are doing building the island back together....
Enjoy every minute~

Much love*
b

radiation -days8 & 9

More 9 weirdness:::
Today is the 9th day of the year, January 9th, and my 9th radiation was today at 9am.
Par for the course.  of course!

I am starting feel the burn get a little more uncomfortable. It's like getting a sunburn from the inside out. It feels like it's lurking and slowly moving to the surface. I'm scared of it's arrival. So I lotion and sit and wait. My fatigue is kicking up a few notches too.
Which I am totally grateful for. Tamoxifen's insmonia is hell. It is a welcome feeling to actually want to sleep.

And dream! I finally had a dream last night. My hair all fell out and so did my eyebrows. I looked in the mirror and got very upset that I had worked so hard, yet I felt I was still at square one. A few minutes later and my hair had grown back.
And I've been watching Parenthood too and catching up on the storyline. One of the characters discovers a lump and she is diagnosed with breast cancer. Chemo, hair loss, the whole nine. I haven't gotten too far into it yet so don't tell me what happens.
What a portrayal. I applaud them because this shows what it really is like and not the sweet pink ribbon stuff you see every place else. It's real. and raw and whoever the actress is - she's great. The eternal fear on her face is some acting technique. Unlike this show- it is very rare to see an actual actor's depiction on TV of breast cancer that's so real. It's so real. Right down to the kale smoothies. lol.  Check it out if you care to take a look at a bigger picture. It really does justice to what it does to a whole family, too. I see so  many alike parallels in that show compared to me and others--- and I just have to give a hand to the show.

Still feeling crappy here and there- slooowly getting better every day. The night sweats seem to be getting worse actually. Last night I changed my teeshirt 3 times because it was so soaked. And sweaty skin + radiation burns really suck. Especially when you can;/t sleep and your sheets are all grody and bleh. BLEH.
I am also not allowed to wear deodorant for radiation so I sweat all nasty after my shower and those poor techs have to be near my stanky menopausal sweating armpits. Poor ladies. They said they have smelled worse though- so yay! I'm not "that bad!"
 


I also finally got to talk to the oncologist about my ER visit- they just want me to keep an eye on things, and stay vigilant. But nothing was found and they think it was probably an isolated incident, but I shouldn't relax until treatment is over. Rads are starting to kick my butt. I even lost 5 lbs from the constant nausea of the Tamoxifen. This shit is for the birds. I feel like I've just about had enough of everything physically. Cancer treatment is a decathalon for the body. All the events and stages. Goodness.


Overall though, I feel a good sense of power coming back over me- Something that wasn't there before and this is something that will rise up bigger than I ever was..... feels great. I wonder just what this power will bring me. Oh I wonder.......

ONWARD.
much love.

b

radiation - day7

Today's theme is upheaval.

Not really much to elaborate on, but life throws us some crazy curve balls.  The Giant Wave O' Stress is at hurricane levels. Personal stuff. It sucks when it's personal stuff.
I don't think I will ever get anyone to see what it's like to live through this, if they haven't already. Never ever.
Go away Hurricane Stress. GO AWAY.

Today was radiation #7- first of the week - I am shuttled between doctors and social workers and nurses today- trying to get answers and get this over with.
No real progress finding out what happened last Thursday yet.
Really not much to report on as for radiation other than the burns get a little worse each day as with the fatigue- SE's from Tamoxifen aren't letting up either. I'm soaking the bed and pillows every night. I wonder if it's dehydrating me. My body is at it's wits end.

I'll make the observation that people's true colors show when stress hits and crises happen. And when cancer pays a visit. Instead of staring it down, we react and really tend to isolate others in our reaction. I have seen sides of some people that I just don't ever care to deal with anymore and I am perfectly fine with it.
Life is too short to be kissing any ass.
There.

I'm growing fists and feet that stand tall and are taking root. I refuse to back down on anything anymore and I have made the conscious decision- along with being involved in every moment- to do what's right for me and my family. And the definition of family are the ones that practice kindness, basic respect, and unconditional love and general courtesy to everyone in their circles despite issues. Not just blood ties, folks.
I have a wonderful family and I am thankful every single day for them.
I am going to say NO more often.
I am going to live my life for me. and my kids. and my husband. That's all.

No more doormat.
It's amazing how much we lie down in life and don't even realize it........


grr!
xo
b