Almost 2 years later..... Under construction

Wow. I thought I would just let this blog go...fade into the moonlight never to emerge again. I felt that "letting it go" would help me keep this stuff in my past. I wanted to forget it all, to not remember all the trials. I wanted to put away the anger. People, and myself told me I have no business healing at the same time keeping hold of what hurt me in the past. "Sometimes you just have to let that go, Brianne. It's not healthy to be angry all the time"... People have lots of opinions. Even more though, people have also been my strength and inspiration and rocks more than ever.
I expected to leave this blog as it was and go right back to the other blog of my life when I was just an artist- going back to what I loved to do, start a new life, move on from this and go. Leaving all that stuff in the past in the garbage and hidden away.....  It was unhealthy being angry all the time at what I believe caused this cancerous path. In that being it's own cancer, I discovered truth in the process- and discovering truth is the biggest weapon we have at ending all these situations like cancer and sickness #1.
 I can't leave this blog. I have to keep learning from it. Maybe help others with it. It's an eternal lesson, a forever road.... there are other things here besides anger. And who the hell who has ever had cancer ever not been angry? One thing is, this blog has probably been my greatest help overall. I was given the advice to start journaling it, and it was the greatest advice ever. It has taught me how to deal with things and even remembered things I forgot because I was so fogged out in chemical chemo, stress, and working through it - that I had no idea what was going on from one day to the next.

This blog has contained everything from raw emotion,curse words, total naivety, frankness of a taboo subject, what's under my shirt, truth of what really happens, and hopefully showing that as much people want to get past what happens to them, sometimes it doesn't end so 'cut and dry' that way.
What have I been doing this whole time since the last post? Recovering and rediscovering. Major big time. And this long and winding road lasts forever.
I discovered the sun rising over the ocean every morning is a precious gift beyond comprehension. And it's free! As simple as a sunrise can be, combined with the powerful ocean and her fresh ions- it becomes a drug my body craves. Now I try to visit that every day.  My morning beach walks have provided me with the most sanity, calm, resolution and therapy no pill or support group could give me. Not to mention a bounty of seaglass I never knew existed before and has allowed me to create a whole new branch of artwork with. Free art supplies? YES PLEASE. Then, since I was paid a visit by a few snowy owls,   I started document every morning with pictures and sharing them on facebook. It's too beautiful of an everyday experience not to share. Weird animals visit, and some of the greatest vistas despite it being "just a plain old beach" occur every day. It's a place of magic. I had to discover this on my own.  My "morning song" as my blog video above perfectly states. This allows me to let it all flow in and out and not to hold onto anything because there's no point. Everything needs to FLOW. And if it flows into someplace where it is needed...then so be it. Flowing doesn't always mean passing through already established channels. It could mean forging new streams or tributaries, or replenishing dry fields too.

So almost 2 years later, I'm sitting here right back where I was in November of 2012, with yet another huge procedure performed on my chest. Another mastectomy = reconstruction.
On the outside, people would think I would be "finished by now", or "over it all" but that's not the case. After the bilateral mastectomy earlier, I went through 29 days of radiation that ended February of 2013, as a precaution. This whole time Phyllis the "wonder nurse" had pushed me to do every form of post treatment, and her fear-mongering is of the expert type. (I also discovered she received a 6,000 dollar check as a gift from Novartis but that's just me doing detective work)- I NEEDED those pills to survive. I NEEDED radiation to clear the space. I NEEDED to take off the "good side" to make sure it wouldn't come back. And all of that was false. I feel really stupid for believing all that stuff, especially when I cast a suspicious eye at the corporate machine of western medicine as it is. And they got me. Having 2 parents whose cancers were both diagnosed at stage 4 probably kept my blinders on.
Truth is, I didn't NEED Tamoxifen. (I threw those pills away and never looked back and even though I took them for 6 months, I am STILL recovering from the various side effects)- I didn't NEED radiation and I sure as hell could have kept my "good side" without any fear of it 'coming back'.
I still feel stupid but I know I can't go back in time and undo decisions. It just makes me question things even more now. and do even way more research than usual.....don't ever accept anything at face value!! Ever.
So thanks to radiation, I am still in the process of surgeries, since radiation screwed up half of Dr. Patel's original breast reconstruction. His face every time he sees me is one of "You really got a huge dose of this, oof...."
What happened is that radiation was set as at such a high dose, it literally melted and fused half the breast to my chest wall- like if someone glued it down with cement. And it shrunk up the breast to the point of it being a very uncomfortable and painful situation with hardened tight skin that I could either leave alone, or try to fix with surgery. So I decided to go ahead with this 4th surgery. The last two surgeries were routine outpatient nips and tucks. We predicted this surgery since Dr. Patel wanted to wait a while after the radiation damage settled in to operate to fix it.
So what was done is a whole new reconstruction procedure basically where they removed all the stuff stuck to my chest, where all the old damaged tissue and tight skin would be cut away and removed and opened up the channel and outer structure to welcome new tissue.  Dr. Patel then harvested muscle tissue with a blood supply from my back, cutting out a huge section -tunneling it under my armpit and replacing the necrosis and breast tissue with healthy muscle and new skin on top. Like a big old fleshy muscle patch. It's called a Latissumus Dorsi flap procedure.
I had it done on Friday Oct 3rd. Today is Monday the 6th. Thankfully I was able to get out of that hospital (they are filthy places outside the OR) by Sunday and it's good to be home.

The procedure is fascinating. How do they figure all this stuff out? I actually watched a video of the surgery being done beforehand. It's very painful though.

It's just nuts how this machine can just continue for years after the initial diagnosis for some women (and men). Some keep getting complications and they have clocked in over 10, 15 surgeries.... Major surgery is no joke. It's also weird when it's years later just to correct the original work. I'm glad I decided to do this surgery, despite the pain I am in now and the risk I put myself in.
The day started out nervous, but the more I waited to be prepped with surgery- the more comfortable I became with knowing that my body wasn't going to be permanently glued down anymore. I finally met again with Dr. Patel on the morning of surgery, with his marking pen.

expert tailor

After all this time he finally noticed the Ganesha tattoo I have on my back- the Hindu god of removing obstacles. Son of Parvati and Shiva, he is their blessed son-very much like the Christian Jesus. Dr Patel obviously being from India commented on how nice it was of a tattoo, that he really liked the image.... It was almost sliced into as a sacrifice for the breast repair. After vocally debating it back and forth for about 2 minutes and drawing a lot with his pen, he told me he would feel uncomfortable cutting into the "face of God" and carefully traced around Ganesh's head. I was wheeled into the operating room that was playing the Grateful Dead (they asked me in the prep area what I wanted to hear as I was going under anesthesia) - So I have the elation of a doctor that respects my body art, it's meaning, and my music right before surgery. A HUGE needle stuck into my arm without any pain done by a perfect nurse/anesthesiologist combo. Live Grateful Dead from Veneta Oregon in 1972 was playing as I was wheeled into the OR (one of my favorite shows ever). Best prep ever.
I'm crying just thinking of it. <3 I don't remember going under, but I remember a vague memory of a 'dream' or whatever experience it would be you would have as a machine is breathing for you during that time. You technically are not alive on your own. I wish I could remember it more, but what stood out was 3 large rectangular tablets or parchments. They had words and elaborate art and decorative lettering and images on them. With a message. I felt like I am seeing them in some hidden place unbeknownst to the outside world, I am in some place meant for people in this state somehow. A voice or person I could no see but was close by me was reading them with me and showing me what they said- but I don't remember what they said! Argh! I do remember being pulled away by that loud nurse yelling for you to wake up and extreme thirst. I opened my eyes. Goofed out on drugs, I wake up connected to all sorts of drips and drains and needles. Post surgery was the worst part, I threw up for a few hours after surgery every time I tried a sip of water. That's not fun when half your side is all chopped up either. I was shot up with anti-nausea meds like clockwork until it finally stopped.
I was determined to chuck all that ASAP and get out of there as fast as possible. I don't like hospital stays too long, and neither does Dr. Patel, so we worked together on that. I loaded up on water, turmeric, green food, water, and herbals when I could begin to take food and drink again- and told myself I would be good enough to leave by Sunday.
I have a huge amount of some really amazing people and family and friends around me sending good thoughts and energy- and I felt every ounce of it the whole time. That also helped me get out Sunday... THANK YOU.

So I am now home, with what looks like a very patched up innertube sticking out from under my armpit from surgical swelling and tunnelling, 2 drains channeling fluid out, and a huge 5" sewed up gash along Ganesh's head on my midback from where the muscle and skin was removed.
More battle scars.
My body has been rearranged, sewn down, moved all over and amputated. My stomach and back have been installed into my chest, and scars are starting spell out letters. I'm really tired and spend most of the day trying to walk around the house as much as I can, I cannot really do much of anything since I can barely use my right side past typing. I can't even draw right now- but I'll get there.

Still grateful as hell for my current state of whatever it is and I will never curse my treatments as they are part of this path. All ya can do is just make as many jokes about it as possible.....right, Joan Rivers?

So this is where I am almost 2 years later.... I don't know if I will be 'done' after all this surgery physically, time will tell but I sure hope so. It's too early to tell if this surgery will heal into form....
Nipples are technically the last surgery for most of us going through the reconstruction. Scarring is an unpredictable result.
It will be 3 weeks of straight up not doing anything (torture for this Virgo who doesn't know the meaning of the word "rest") and repairing the body once again. I cannot use my right arm for more than typing or holding a glass, and I can't let it cross my lap or pain starts. I can't lie back either.
It's amazing how many things your latissismus dorsi muscle is needed for every day activities. And some women use this on both sides for their initial reconstruction. I like the word dorsi because it reminds me of a dorsal fin....

My husband and kids have been the BEST. They have basically taking over everything and taking very good care of me as I get better. I am very lucky to have them in my life. And I couldn't ask for a better bunch of people to be around all the time.
I'm doing my best to keep my body as clean as possible, keep the times good and lighthearted and just live my life the way I like without the worry. Worry sucks and worry makes you sick. Just dance. However you do it, still or in motion. Whatever good makes you smile. Just keep doing it.
I don't worry about doctors appointments or blood tests anymore, I'm tired of stressing over the "next 6 months" ... I'm just not going to do it anymore and leave all those things behind me and just be the way I need to be for my own health. Much bigger things to direct energy towards, anyway.

Not worrying anymore. Whatever it is, shall be. And I'll make the most of it.





......
 the road continues
.........
until my next post:::

b

Ah detox

Detox is that fun process where you spend some time concentrating on getting the crap that doesn't belong in your body OUT.
In this case, it's just about everything besides people.
Finally feeling human as of a few weeks ago- the kind of human where you can do 6 hours of housework instead of the 3 that sends you into a nap.
Not that I love 6 hours of housework, I take breaks- but you get my drift.
Laundry, gardening- I'm getting really good at doing this stuff with my left arm. Gardening is easier than I thought.
Mark still needs to pick up the heavy stuff for me, but I do pretty well digging and weeding and planting with one arm. The right arm does work- I just can't cut it, lift with it, push, pull or exert it too much.
I've managed to figure out how to pick up Melody with my left arm and a little of the right where it doesn't aggravate the condition. I'll probably wind up with Popeye arm, but who cares. I got tattoos, and room for a badly drawn anchor. why not?
I'm managing a little more every day. My limits are still very much there- but it feels like a heavy curtain is slowly lifting every day.
The Tamoxifen isn't treating my bones very well. The 80 year old arthritic skeleton makes for uncomfortable clothes every day. Just gotta keep moving. Moving moving moving.
Walking gets difficult - I try to go to the boardwalk now that it's been rebuilt about 80% and push the stroller to push past the pain. The ocean and what it costs to park in my own damn zip code so I can get to the beach easily is enough to keep my mind off my feet for a bit. Best time to go is the weekdays.
Weekends are crazy and I don't even venture down the mile up the road- a town of 20,000 turns into a town of 80,000 for a whole summer and getting around is bad. (Locals know the backroads)-- but weekdays or the rare event you can get a free street spot is awesome. The kids like it too.
The legs will hurt- but it keeps them feeling better in the long run. Strong like Bull!!!

I never was able to see Dr. Cairoli last week either. I am finally insured, while means everything is new and I need a referral for the oncology appointment. I drove an hour and a half through the Pine Barrens only to get a request for a referral, which I did not have. EEK! So I went all the way back home and finally got in to see the new PCP- which is actually a clinic of doctors and nurse practitioners happy to help. That was yesterday.
Can I say I am so happy that my old doctor is gone? The idiot who refused to acknowledge that I worked without ventilation around so many chemicals, yet swore I was a heavy smoker. Walking into her office feeling very very sick 3 months before I was diagnosed with cancer telling her that I felt something was wrong.... she didn't listen to me or even look at me and gave me a script.
This woman left it with me to call her if anything went wrong. No mention of routine exams, anything. She never gave a shit. Nobody tells you shit when you get cancer. I learned everything from a magazine in the waiting room or the internet. Some from the doctor, but very little. Nobody told me I wouldn't be able to lift over 5 lbs forever, or that I am to supposed to have deep massage done or have blood pressure cuffs or needles banned from my arm.
I learned it all on my own. Everything happened so fast with the cancer and diagnosis, but nobody mentions scans or blood tests or anything. When I ask, am told to ask someone else besides the doctor who is treating me. Apparently I am SUPPOSED to follow up with my PCP. Thankfully at this appointment, the nurse practitioner that I saw  actually gave a shit and couldn't figure out why nobody had told me to get any scans after all this crap. He immediately recommended a full blood test scan (10am today!) for everything and a echocardiogram for my heart. Like really? Thanks man. He also approved the marijuana approach to dealing with pain after he informed me that he can't legally give me pills. I told him I hate the pills anyway. No worries.
So someone actually cared enough to see something I needed and make it happen. Wow.
I'm finding I am really dissatisfied with my oncologist- I loved the care and the hospital, but the "Team" has proved to be nothing but people with blinders on.
Phyllis can push the Tamoxifen on me hard and heavy. But I meet more and more women with side effects who had to stop taking it. Personally.
This woman is so hard up to give me this drug but fails to give a whit about where I worked. Or what I eat. I literally inhaled the chemical equivalent of a pack of cigarettes an hour at work with the air I breathed at work and it never phased them. But I "did the right thing" by calling OSHA. Pesticides MAY have contributed to my cancer is what the doctor said too, but I eat all orgaic and don't spray my garden or lawn at all. But the Tamoxifen manufacturer- that company that makes that breast cancer pill- also manufactures a pesticide that has been banned in a ton of countries because it CAUSES CANCER. and My doctor is right and I am wrong for questioning it? Wow.
And the Tamox  side effects that thousands of women on internet message boards have- that I can relate to--- do not exist in the oncologist's office. I bring up the rage incident with the nurse..."Tamoxifen rage? Never heard of it...oh wait- I'm googling it now- wow- it really does happen!". And I didn't go to fancy colleges. Really? The bone pain, the vertigo, the yuck- that's all my fault and not Tamoxifen's? Ok? Not sure why they love to defend a pill, probably money.

This racket- this medical racket we are squeezed through... I had so much faith in them and they held the reigns, but it wasn't right. I got attitudes when I had no idea what was going on, yet nobody communicates anything or can answer a question. It's all a mess.
How does someone who treats cancer just not give a shit about environment, diet or lifestyle?
You have a heart attack- and you eat like crap- your doctor restricts your diet. You get cancer and you eat like crap- and they ENCOURAGE it. Eat whatever you want. Go for it. Nobody tells you sugar is a friend of cancer... It's why they give you the sugary crap for medical tests. The junk goes right to the sugar. But no. Nothing you eat, or smoke, live or where you work has nothing do with your cancer- nobody! Good God, what is this earth coming to? Do people care about other people any more?
Blech. I'm an inch away from throwing this stupid Tamoxifen back at them. No thanks.
But that's ok. As long as I have the Fox Chase surgeon who can reattach my blood vessels and boobs, and Dr. Miller cutting out the pieces- an oncologist other than Cairoli is probably something I'll be looking for in the future. He's a nice guy, but I don't want a nice guy when it comes to cancer. I want someone who cares and questions how I got it, and what i can eat to keep the blood healthy. My dad died of an environmental cancer- I don't want to join him just yet, ya know? His doctor cared and questioned and was so awesome- but unfortunately my insurance won't let me go to Pennsylvania.
Ugh. NJ has no "wellness" oncology. Ironic, since we have the highest cancer rates per area than any other state.

So it's day 11 of the raw detox and aside from yesterday's nasty headache (coffee withdrawl)- it's going ok. I'm losing weight (rare when you are on Tamoxifen) - Only 5 lbs so far (I put on 50 lbs during treatment!!) - but I'm feeling good purging crap and unnecessary stuff out. I cleaned out my closet and bedroom and that was a feat of strength. 2 kids and their socks will take over any house. Spent 2 days donating and chucking and packing and folding. And I found it was really painful. It opened a wound that pretty much is the main reason I had to start sitting down and blogging again.
I never imagined the wound would open- but it really is PTSD when it gets bad- I'll have an anxiety attack after lying down and all of a sudden I flash to the operating table right before my surgery, My mind seems to replay the horrible parts of all of this and it won't stop. I hate it. I took a Xanax yesterday and I never do that.
Purging my closet meant I had to throw out all my clothes I can't ever wear again. The cute halter tops, the bathing suits, all my bras- had to go. My nursing bras were the hardest.
It was too much. You wouldn't think that throwing away those things would be so painful, but it was. Death of the ego, yes- but crap- I'm an amputee. Some days I wish it was my legs instead. I know it sounds vain. So what. It HURT.
I couldn't part with the shirt I wore to the hospital though - the last shirt my old body wore. At least it was striped. :)
Anyway it was just real tough.
Fuck- you feel all put together and some dumb thing tips you over when you least expect it. Doesn't help when menopause apparently goes out the window and your period comes back with a vengeance of epic proportions that really don't help the situation either. Sounds dramatic- but it is! lol.!!
Agh. It dredged up so much stuff, cleaning out that closet--- but it motivated me too to just let it go. GO GO GO.
It is just taking it's time leaving.
Lets' hope for some clean blood results and a better heart. I live in New Jersey after all.

Phyllis next week (yay). No Dr. Patel until August. I cannot wait to fix this freakshow chest. Please.
.....truckin on.

Been a loong time, eh?- raw detox-DAY2

Hi everyone (all 7 of you...maybe more?) ...

Time finds these posts farther and farther apart. I think about it though- it has kept me sane in the worst of times, that's for sure. I got a new laptop so I can be mobile finally in my work so it helps when it's 3am and I can type in my sewing room and not in the kitchen in front of the neighborhood. It's easier when you don't feel well.
...
And here I am, with my familiar friend insomnia- sitting in my house at 3:16am- been up since 1 of course, right before the husband gets home from his endless evenings in Belmar recording this album. It's a big project for him. I'm excited for it.
What's new.

Well vacation was great, The house was great- the time was great. Worth a few extra bills to be able to be 42 feet over the ocean, a nice clean house, being able to see my family. We go every year- but this year was the "screw you cancer" vacation. The year before I had been freaking out because I was due for my biopsy the morning after getting back. May 9th was 6 months since the surgery- and I was due to see Dr. Miller oddly enough the morning after getting back from vacation.
Of course in OUR HOUSE, wellness is never a long term option.
Melody had had a rash on vacation, a simple diaper rash that got a little aggravated by a 10 hour trip in a carseat. Red patches, but no broken skin. While we were at the beach, she had been playing in the ocean's pools, and I was glad since "sticking it in the ocean" always cleared up anything.
On our last day, it hadn't cleared up- and in fact had gotten worse. and kinda ugly looking. (I'll spare you the photographs) She had developed 2 small hard bump on both legs, opposite each other on her inner thigh right above her knees. Also, 2 smaller ones behind a knee. They didn't look good and my mother;s instinct kicked in. My niece who had been staying with my sister in NC, was a nurse and had MRSA in the same spot and she said it looked just like that and it was painful.
Keep an eye on it, she said. No fevers or vomiting- she should be ok.
Ok.
Here we go. Another thing come to kill us...why?!
We drove home cautiously- the kid threw up 3 times on the way home and we were constantly on the phone with grandma and my niece and oh man. scary shit. By the time we made it home, we gave her a bath and I had been soaking the bumps in tea tree oil for 24 hours, and it wasn't working like it should have. This was not a zit, or simple ingrown hair.
The next morning, I cancelled Dr. Miller's appointment (the 3 hour round trip? no thanks) and took Melody to the pediatrician. She took one look and kinda knew what it was. and gave us 2 options.
1- take her to the ER and have these lanced, drained and sewn up, and tested for MRSA 2. give her MRSA antibiotic medication and if it works, she had MRSA. I knew she did, and had to spare this kid the hell of a hospital again.
So we took the #2 option, and took the chance. No time to relax since coming home- it turned into wound care central for 24-7 for a week straight. This infection is HORRIBLE. and ugly. The poor kid wouldn't eat, couldn't walk- I consulted Dr. Google and discovered this stuff called Manuka Honey.

They had it in a health food store a half hour away-- and Mark ran right out. It's 40 bucks a jar, but this stuff says it KILLED MRSA and healed the horrible sores it caused. It was constant baths, new sheets, sterile laundry, vigilance to make sure everything was contained- but this honey was applied to her wounds and it got BAD. It took on the forms of Dante's stages of hell- this poor child....and this stuff kills you if it infects your blood. That honey was put on clean sterile gauze and wrapped onto the wounds directly every 3 hours and I watched this thing drain and heal itself like nobody's business. A wound that was supposed to stay open for weeks closed up in a week.
Amazing.
So we had no time to come home from vacation and relax and I need a do-over. No way we can get another house to rent, but we have a tent. and that's all I need. We're heading outt for July 4th weekend since Mark isn't booked that weekend. And at the Jersey Shore, unless you live directly ON THE BEACH, or have a bike- you will not be able to see fireworks on the beach without having to deal with the 4 hour traffic jam to get back to your house 5 minutes away. I had enough stress. LOL.

So that was fun- vacation>MRSA.
Tamoxifen hell has leveled off a bit, but still stupid. The bone pain has gotten worse, but the hormonal crap has gone down since my period came back last month. It felt eerily similar to when it comes back after you have a baby. The crazies have stopped- YAY.
I still hate this drug and the fact it has made me 80 years old.
I am pushing past it though and walking the boardwalk, trying to garden left handed, stay active.
It helps.
Today is day 2 of an 8 week raw food detox I'm starting because I just feel like shit- and I'm tired of feeling like shit. I stopped juicing in the last 4 weeks because I got violently ill the last time (another pleasant side effect). I had slacked- gained some more pounds and finally couldn't take it anymore. In 2 weeks, I go completely raw for a whole month. It's going to feel very very good to get the chemo, and the anesthesia, and all that radiation shit OUT.
and start repairing my body back to how it used to be. Even before I started working at that horrible chemical factory.
I'm also noticing for the first time in 5 years, I have color on my skin. I'm OUTSIDE. every day.

I did finally get to see Dr. Miller a week after Melody's MRSA fun, and I was given the all clear after a very thorough exam of my lymph nodes and "breasts". The pain in my back was muscular thank goodness, it went away with heat. Scary. I had felt one spot on my back that was hurting for weeks. and getting worse.
Tomorrow I follow up with Dr. Cairoli.
Thankfully, I have health insurance again as of June 1st thanks to the state of NJ- and despite the step down from work's plan- the choices are scant. But my doctors are on the plan. YAY!
I don't know if I have to go for any scans- I'll find out. I hope not.
I can't wait to get back to Dr.Patel... I need my chest fixed once and for all. Angelina Jolie keeps trying to one-up me. I can't take it anymore.

Overall, I'm tired and still wacky with sleeping and being in pain- but getting better a little bit every day. Finding the joy in festivals again too- I come home from them like a kid coming home from Disney. When can we go again?! I love festivaltown. My Stonehenge was cancelled this year, so we have a few we will be going to. Good for the soul. And I should be strong enough to take the kids with us. Melody is a music and dancing and crazy freak child- a sheer opposite of her older sister. She has yet to experience a festival fully. Can't wait.
Walking is the only issue. I can't do that for very long before the pain hits and I need to sit down. I am so elderly. (Meanwhile, the husband just turns 55 and has more energy than me.).
Getting my house to be livable, cleaned up and organized is also a huge goal.
This detox is going to be awesome. And I'll fit into my jeans again.
I hope it fixes this leg pain.

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..

Hello, again.....hello.

At the time of my last post, I had just had enough with feeling like crap, it took a toll and I finally snapped. I thanks the good people at Mary's Place by the Sea- the cute house in Ocean Grove where I stayed for 2 nights to get my bearings back. It's been about 6 weeks and I feel great- It is amazing how much something like 2 nights away from home in a very quiet house can help.
It is an amazing place with an amazing spirit- I was really happy to be a part of it.
They focused on nutrition, reiki, massage, relaxation techniques and just quiet. Another woman was also staying at the same time I was. The odd coincidence she managed to be at a house 2 hours from her home, with someone who lived locally- and we both had the same oncologist. Her chemo days were Thursdays when mine were Mondays and Tuesdays! So it was really cool to be able to talk about what we were going through (she just beat triple negative breast cancer herself) , and relate to the doctors visits and the chemo nurses. It was such a great time. The house is run solely on donations, and they had just reopened since they had 6 feet of water in the basement from Sandy. They are lakefront as well as oceanfront.
I was in awe of how many people I met that got rid of their cancers with food and diet changes..... I could never do that, but it really opened my eyes to really how its neglected when you visit yuour oncologist. And all the stuff they don't tell you- like not to get a massage in the lymphedema affected arm, and other fun facts. I also learned jumping on a little trampoline helps lymphedema. Cool. whatever works.

About 2 weeks after I got back from mary's house, my  daughter Melody came down with a bizarre sickness that started as a low fever- then skyrocketed and landed herself in the ER- and in the hospital for 4 days and nobody could figure out what was wrong with her. I came very close to losing my child. It was a serious punch in the head to add to what we had all already been through- but all I know is that I have never been so scared in all my life. I prayed over my sick baby for 4 days watching her suffer andbe in pain and ovbody could help her. Eventually- it turned out that she was anemic, plus dehydrated, plus an ear infection, and the big one, which was a penumonia called mycoplasma IGM. Its a bad contagious pneumonia. It was frightening. I am glad that is past us and we can get on to healing- for everyone. Melody is back to her old self again.....

Which brings me to being done with the majority of treatments for a month and 25 days already. My hair is growing back and growing UP, which makes it such a pain to control. I look like a little boy on his first day of kindergarten if I can brush it wet. lol. It looks crazy, some days it looks fine. If I go out to a show, I put a wig on. a fun wig because this hair is awkward. I don't mind it though. Just venting. It is really nice to have my eyelashes and eyebrows back- and I have noticed from pictures even 3 months ago- my color is too- I looked like some shit right there for a while. wow. I still look like shit because sometimes someone will ask how I am feeling and then comment that I look tired.
I am tired.
I am slowwwwwly coming out of a very dense fog. I finally can say this past week I have been feeling a lot better overall- but I still have my days of pain. Or my arm will get bad, or I find a small fever. I have more good days than bad right now so I'll take what I can get.
This new life settles in to your head abruptly. Like your dropped on a distant planet and then just forced to make your way living a whole different way, from breathing to eating to thinking to socializing.
I cannot work anymore doing what I was. No lifting over 5 lbs, pushing , pulling or strenous activities with my right arm. at all. forever.
All those times I said I'd give my right arm for something and where are those things now? lol.
It ain't fun, and it certainly is not easy. I will never be the same.
My arm is especially screwed up adn I wound up needing to purchase a sleeve and gauntlet, whic basically is a big piece of fancy pantyhose you wear up your arm and on your hand to compress gently the lymph fluid away from your fingertips and back up the arm. GODSEND. I got a funky one with stars too. I love it.
It allowed me to work in the garden (one handed still), but without the strain and horrible pain a normal day would leave an unsleeved arm.
I dry brush and massage it and stretch it, but it will take a very long time to heal this.
Aches and pains.
I do not like them, and they visit me every day. And they are scary- because you think "Holy shit- is this cancer coming back?"
Dr. Cairoli told me when pain is constant and 24-7, to call them. Intermittent pain isn't necessary for alarm.
I'll get pains where the chemo needles went in, or bone pain residual from chemo, and there's a nerve ending that seemed to get caught in my healing stomach muscles that sends arrows through my side when I cough.
Fun.
This is every day.
I am very grateful to be unemployed - despite the fact I lost my health insurance. I am grateful I do not have to be bullied to going back to work in an environment hostile to my health anymore.
Things are progressing well though in that department. What goes around, comes around. Negligence will be addressed and brought to light.
Seems though that people are getting paid off and violations disappear, but it won't deter me. No way.
I am also grateful to have rediscovered the art I had put on the back burner stupidly for the past 5 years.

Fun side to life right now is that I was finally able to walk into my favorite tattoo parlor and sit back in that chair again. My tattoo artist had not known until about 3 days prior to me walking in, and he greeted me with a big hug and made sure that I would be coming back for more after he generously gifted me this latest piece. Great guy. It's on my left forearm (no tattoos allowed on lymphedema arm)- below the elbow.... love it. I will be going back for more, damnit. It definitely has a different feeling than a traditional sit, and healing is different- but the result of a fine piece of art being put on you forever is always the same. Happies!
Normalcy is slowly coming back.
Feeling and nerve endings are slowly coming back.
Life is slowly coming back.
Simple things like tattoo appointments and going to see Mark play for the first time since September are HUGE.
The benefit is also turning into something of a reunion of everyone I've veer known in my life converging under one roof--- I am seriously humbled, flabbergasted, overwhelmed and brought to tears from all this love.
It's extremely hard to accept it, but I was told to just shut up and enjoy it.
I am blessed.


xo



b

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!