radiation - day3

The third radiation on New Year's Eve. Fancy that.
I was hoping to be free of any treatments in 2013- but at least I won't have cancer going into 2013.
Today was a non-washcloth day.
Since it was New Year's Eve, I think they wanted to get out early so they had me come in at 8:30. Oof.
It was a nice quiet morning on the Garden State Parkway- the half hour drive isn't bad when there aren't any school buses or the old folks who drive 30mph in the left lane.
Went ok.
I'm tried now- a little nauseous- I hope I don't get a repeat performance of the last radiation day. Although it is six hours away from that dose and I am queasy. Wonderful. My arm has been a little puffy too for a few days. Little puffy is ok. Big puffy is not ok.

I can bitch and moan and rant about how this was the shittiest year ever- My husband fresh from the hospital because of a small stroke he had, major upheaval in the music, cancer, a hurricane, mastectomy, the spell check on Firefox suddenly not picking up spelling mistakes- ---life turned upside down.
My first instinct- fingers up with a large "F YOU" to 2012.
Then I had to stop- and rearrange.
I'm not going to curse 2012.
Every year has shit in it.
I think you know where I am going now- This is the part of the blog when I hold up the turd and show you that silver linings exist- even in turds.

Yup.
The "Cancer is a Gift" speech doesn't exist anymore though... Life is a gift is where I am going.
I won't run on an on spewing hippie things, love and peace and how life is grand now that I have seen it's underbelly. You know this already, but if the image of me you may have is that lady with the man's haircut running through flower fields all day crowing "life is sooooo perfect and awesome! You must Love it too!" - you are far from right.

Life for me this year has become school.
I don't like school- I never did - I was a college dropout who didn't think i needed art taught to me when I knew how to draw in the first place.

Well I thought I knew everything about cancer and how to handle it because my mom and dad had it. Piece of cake. Just get your chemo, rads, eat good food, and you are done! Happy Easy Cancer Time!

Nothing could be further from the truth.
I didn't know everything. I thought I did,
When I found myself in the driver's seat- It was 100% different. I was forced to find the good parts of each day. Like REALLY find them. Sometimes they are obvious, other times you have to dig through a proverbial couch in the cushions. When you get that breast cancer diagnosis, all of a sudden you are the only one. All of a sudden, nobody close to you knows how you feel, unless they have been through it too. Even still though- everyone's experience is unique, so the isolation of how it feels is multi-faceted...and kind of painful at times.
You are forced to comply with treatments, drag yourself out of bed to see 100 doctors, show your diseased breasts to all of them and they all have nothing to say but that you're doing great and what is expected of you.  It's alone time inside. Then in the end, everything is cut off or removed and moved or whatever- but you do have to deal with somewhat being disfigured. Oh well.
Just a container. Now I am just funkier looking and a little dented. And still very much in school.

Where is all that good attitude when you have to deal with an intense chemotherapy, be at work through it all, raise 2 kids, provide for a family and keep your chin up through it all?
It's hard- but you HAVE to have it. Anything less than a good attitude and you might as well plan the funeral.
I won't change my fate by complaining. Complaining won't cure my cancer.
I can have a down day. But it isn't giving up.
You can be sure that in my head I am running through that flower field at least- and that's all that counts.

My 2013 has no outlook. I can make all the plans I want- I have come to know that nothing is ever definite. And everything is possible. I just need my health. Aging, at this point in life, is a privilege.
In the realm of the house, our goals are to get the living room painted, something I have wanted for the past 10 years. So now we are doing it. And soon we will find out how awesome it is to have a popcorn ceiling. and painting it.  And I'm taking Mark's old shitty Fender acoustic and slowly making it a painting project.
Last year I started 2012 doing a different art project a day and blogging it. It stopped May 8th, 2012. The day before my world met cancer. This year, I'm just going to take it easy with the guitar and let it evolve on it's own.  Maybe I'll finally meet Neil Diamond and he'll sign it, too.
Everything is possible, right?
Impossible is me doing much of any hard work either - I cannot tell you how frustrating not having a working right arm is. And if you push it, you suffer. I want to spackle, damnit!
I wanted to paint a mural on that wall, too. Thanks a LOT, breast cancer....jeez.
Unfortunately I cannot fold laundry or make beds much either.
Sad, I know.


Look at the mountains ahead of you, but don't ever take your eyes off what is under your feet.

In the past, New Years Eve was always MY day to party hard- get down and dance and do it up proper. I even wore evening gowns. Never a question.
Since having Melody, I haven't gone out at all on the 31st.
I'm much more comfortable at home, and I'm glad my husband doesn't have to work tonight.
Next year we'll get back in the saddle. New album is coming out with a bunch of friends, it should be a busy festival season with promotion and stuff.
Tonight I spend my last day of 2012 with my family, and my mom and we'll toast it all away for a better year ahead- but tomorrow never knows..... don't ever take your eyes off the now. I hope to be able to say "I beat cancer another year" for every New Year's Eve on out. And maybe I'll wear an evening gown too. I got these fabulous new boobs, why not?

make my gown sequined.


~happy new year~
xo
b

radiation - day2

Today was numero 2!
It was also the last day of physical therapy- which ended in a nice 5 minute session of deep tissue massage to the Howdy Doody Cording Ropey Armpit Corral.
Broke it all up nicely- and did more insane excruciating exercise to build up the arm... After my hour was up, I said  goodbye - and bid my farewell to another stage of the breast cancer carousel and additional co-pay.
Now radiation is the new gig in town;  I feel like I have that "job" again. The same feeling I had with weekly chemos between the drive to Mount Holly, the standard walk down the hallway and proverbial recpetionist who knows everything about you - the place you gotta be all the time, for the time being.

It's an easy procedure I'm going local for in Toms River. Same hospital where I had both my kids. Nice place, although it isn't my first choice. It's most certainly not my last, though- which is good.
I walk in, go to the ground floor and that's their cancer floor. The chemo room is one side, radiation down the hallway.
They call you in over the loudspeaker, then you walk through a hallway- take everything off from the waist up and put a gown on- the techs then settle you in, line you up to the lasers, and off you go. They zap you with a giant expensive laser pointer (no pain) for all of about 5 minutes with the big machine and that's all. With mine- I need to have a warm washcloth over the breast and armpit every other day. The tech says it brings the dose closer to the skin and helps the distribution of the radiation. It's a cumulative effect, so I'm still patiently waiting on the part where I sting, burn and should be glowing...... There's also a small part of my lung that's receiving radiation too- which kind of freaks me out since my lung is fine- it's just bad luck that it's in between the breast and The Armpit Corral & Rodeo. Like some weird internal organ love triangle. Or a really good episode of 'Cheaters'.


I also got to meet shortly with Dr. D'Ambrosio the radiation oncologist. He likes American Pickers too.It was a quick visit.
Dr. Miller said I didn't have to have the radiation in his opinion. Phyllis insisted on it.
So basically this is my new every day.
And I got my daily appt. time changed to 9am, just to keep with tradition.
And Rocco- if you are reading this, they have a bell here.

When you talk to others' about their radiation experiences- obviously they are all different- but the main mention is the burns.
Hopefully this stays down like the bad fingernails I hardly got.
I left felt feeling a little funny- but nothing I was worried about. The tingling and crazy shooting sensations in my armpit was most likely the nerve regeneration and the deep tissue funtime from earlier.
Then I got home- and found myself tired. And strangely craving a cigarette so badly too. For whatever reason. Cancer's not stressful or anything.
I am not sure this is normal either, but today I started seeing a little bit of spots in my vision, then it would go away- and then a few feelings of just being slightly out of my body.
As if my body has jumped through enough medical hoops, here's another one and I'm discovering tricks it can do.
A few more hours go by and after a cup of tea, nauseousness sets in and bam- I threw up.
I didn't want to- maybe it's the Tamoxifen?
Or just my body hating all of this?
Or psychic stuff?

It was bad though. I felt better afterwards.
Googling it later on- it seems to be a side effect of radiation. Never heard anyone say they threw up from radiation. In fact- I am assuming this to be the 'easiest' of all the treatments.
I shouldn't assume though. It's not good to do as we have seen from past experiences here.

So a new upheaval- new regime.
It's carried over into home life- my kids are their own weird sleep cycles- way out from the norm- and they're sniffly again.
Azalea however is thrilled that she can now Skype with her cousin in NC, and watch movies on her new Kindle- that's she's been buried in the screen or playing with her sister on her winter break.
Her and Mark went out for a daughter date to see the Hobbit which I thought was sweet. I always loved doing stuff like that with my dad when I was a kid.
Melody is Melody- rambunctious and spitfire loaded with fireworks and hugs and funny faces. Love that kid. Everyone is having a nice winter break, home and together.
Side effects don't take a break though- I wish they would. The chemo brain and confusion is getting better at least a little bit.... and I'm having the menopause symptoms come back too for some reason or another. Hello hot flashes and knee pain! welcome back!
My hair is growing back like a champ, it's a nice shade of pale ice blue from the last bits of the aquamarine rinse I did last week. It's getting darker, too. And finally getting to a nice length where I can allllmost spike it up into a tiny mohawk.....
When I started this blog- I hadn't yet cut off all my long hair- and I had expressed that i would miss Melody's bedtime handful that she would grab very much.
Tonight when I laid down with her so she would fall asleep, her eyes started to get heavy and she fought Miss Lily White's party invite....Tried so hard to stay awake.
She reached over with her sweet, plump little half asleep hand, and grabbed gently a handful of my stubby cat fur-like hair.
For the first time in months.

And went to sleep.

My heart melted and that's when I finally felt like I am on the road back home.
A new home, but now finally starting on the way back home.

What a long strange trip it's been.

radiation- day1

Counting days has arrived again-
I started the radiation treatments today...
Just when I had thought I was done with the routine hospital visits, they come back.

So I have to do these - 5 days a week till I hit 28. About 5 weeks.

The first treatment went ok- It was pretty uneventful in the fact that I didn't really feel much of anything- I just laid on a table very still with lasers all around. Like Glow Bowling.
My appointment last week had me lie on my back with my arms over my head (yep- I did it! Thanks to physical therapy) - and they made a mold of my head and back. And gave me three little tattoos- one in the middle of my chest, and 2 on either side under my armpit. Just tiny dots... Nothing fun or cool like a snake driving a knife through a tiger's eye or anything. So they line you up and leave the room- and this big machine moves around you and the laser sits where the cancer used to be. You lie very still and breathe normally, and then they come back in and say "You're done!".

So that was it.

I asked the radiology tech when the burns start and she said about 2 weeks. Oy.


I go back every day except weekends and holidays until 28 are done and then I am done.
I am also going to a physical therapist named Bruce 3 times a week. Bruce makes my arm go a little past my comfort zone with different exercises and working the corded bundle of tendons and nerve endings in my armpit apart. Right now it's like a really tight rope of every stringy thing in my arm pulled tightly and sewn up under my armpit. Weird. When it gets real bad, they call it "cording" - which is just what it sounds like. Your nerves and muscles and all that sewed up bundle gets real tight and extending anything is a painful burning ordeal. Thanks to Bruce, we are slowly working it out to be in a more comfortable place. And hopefully stay there.
You can see the tendons in my arms twist around my forearm rather than their usual stright up and down liek they used to. It's painful, but you learn to take it every day as it comes. The biggest issue for the arm is the nerve regeneration- Burning inside like hell. Thankfully it hasn't swelled up too bad since surgery. We don't want that.
That's a problem called lymphedema and I'm glad it's staying at bay so far. If i had had it- it would be even worse pain, swelling, and I would have to wear a compression sleeve.
I don't do compression sleeves unless they come in gold lame.

My stomach is also giving me some major pains and issues with the healing- not a good feeling, but it's scar tissue being moved around and unsettling and healing and pulling and bleh. Just bleh.

I am walking upright and driving now when I can too, which feels great. It feels HUMAN for a change.
I still can't hold my kids, but that is something to work on.

I probably also won't be able to go back to work till the end of February as well. Still so much healing left to be done- there would be no way I could do my job right now. This is serious surgery.
My boss is being extremely gracious and making sure I'm 100% before coming back. I needed more time

I'm probably looking at one more small upkeep surgery of the girls, and then I should be through with treatments and procedures.... The major ones at least.
Patel's PA says I am healing really well in the breasts which is good- that blasted hematoma is still there, making for an uncomfortable firm side. Between the flat skin sitting on top of where the nipple used to be, and the surrounding swelling, it looks like a really weird pin cushion or patchwork kaiser roll.

I won't be seeing Cairoli until March again and Patel in February.




Overall, I feel ok, just still very tired. Getting used to Tamoxifen's side effects, dealing with menopause and chemo residual effects too, just riding the wave of a big exodus that's happening in my system.
Next step is to finally sit down with all these bills and insurance forms and receipts and bs and organize it once and for all. I've been avoiding it like the plague, but it must be done. Tax time is here! and Taxes don't care that you had cancer. Thank goodness for good accountants.


life is coming back ...sloooowwwwwly. very slowly.

I can't wait until I can tie dye again, and start working on our house again... and all that good stuff.
 Life, I have missed you soooo much!

Now where's my live music? My ears feel great!

happy christmas. war is over. if you want it.

Merry Christmas to you and yours.....

It was quite the miraculous month here at the Diomede house- I got to go home, we were able to be parts of Christmas givings, the beaches are opening back up since Sandy, and it's almost 2013.
While facebook lovingly pesters me to take a look at my personal 2012 year in review- I politely decline.

No thanks.

I have seen enough.
and more to go.

But really- what a month.
Those victims in Newtown are still heavily on my mind. I remember when my kid was 6. I cannot imagine. I see toys, little children, hurting for the holiday without a child and don't know how the parents are holding it together. My joy comes from how happy my kids are. That is silent in some homes today.
Our family heard of the 26 acts in memory of the fallen adults and children in that school- so we did em. and have no plan on stopping either. We will do them again. and again. Our gifts are all anonymous. They are small, but every one is done in honor of a school teacher or child. We do 2 additional ones too because Nancy and Adam were someone's children too. tortured or irresponsible- who cares. we are all human family. even the troubled and mentally ill ones.
Azalea loved it.
My in laws are in Connecticut, about 20 minutes from Newtown, so we paid the tolls of everyone behind us on the way up..... silently praying at Exit 10 for Sandy Hook as we passed it.

Now I am not one for broadcasting my personal finances. ever.
But I'm sure one would realize that even with health insurance, there are still big expenses cancer creates- and cancer combined with a last minute hurricane really took a big bite out of our already small bank account. In a phone call to my sister one morning after surgery- I started to get upset that my kids wouldn't have much for Christmas- would we be scraping by. I cried and expressed to her my worries and what happened after - thanks to my sister- was a true miracle. I wouldn't tell anyone else that.
Soon, we started to receive gifts from everywhere. Stuff came in that helped my kids have the best Christmas and saved us so much stress- I cannot even begin to thanks everyone and all the anonymous people who helped us this year. A big thanks to the collective Santa.
I am beyond words.
It is humbling.
You want so bad to thank everyone- but there are no words. So I just throw it out in to the Universe- so much thanks.
My kids would not have had much of a Christmas this year if it wasn't for those magic elves, my sister and secret santas~I even witnessed another family getting this same treatment and I lost it with the beautfy of it all. If I could make a career our of anonymously gifting people things that make them smile, shit- I'd be a CEO in a month. I love this. LOVE IT.

Pay it forward is the law of the land. You can bet your butt that it is now the law of our land here.


My new goal in life from here on out is to live that way.
I don't need any cookie cutter affirmation or a 12 step book to tell me what is inside me- I know what it is, I just gotta not be afraid to let it shine.
I'd like for the grinches and grumps and indifferents to answer me the question of what comfort is found in being a grump? Try not to! Don't be a Mr. Potter!


we need to just stop the bullshit and start living love. Call me a hippie, fruitcake, idiot or dreamer... I am not the only one.


Really- can we all just go on from here speaking with nothing but love for people- even behind their backs?

Can we look at people and see everyone's struggles for a change? Because everyone has one, Believe it or not.
Can we honor those struggles by helping if we can? Or simply being kind? Or best of all- speaking with respect.
If we could all maybe - even for just one week- try to speak with nothing but goodness and positivity,especially in the directions of even the crustiest people.
I would suggest you try it with me if you can.....

I am forever a changed person because of cancer, yes- but even more so after this holiday season between the extreme good and the extreme bad.  I am so very lucky to say I am now cancer free.
I will make sure to practice what I preach- but hell- if doing this makes you roll your eyes, then I feel so terrible for you that doing good is so beneath you or not cool enough. I hope you live the rest of your days well at least.


I can't honor the blessing of life just walking around with a cloud over my head. wtf fun is that?

love each other.
merry christmas.....

Be Good Family.

What to even say anymore.....
in the light of recent events- I just wonder what the hell is going on.
I'm a mom- and I could never imagine sending my daughters to school and never seeing them again. Or the thought of their last moments being in fear without me to comfort them or take a bullet.
I'm a jersey shore resident- and I could never imagine a town to live without a boardwalk.

Boardwalks and kids are both gone to heartless actions--- and you might say "who cares about the boardwalk NOW?" or "Sadly add these kids to endless list of victims that seem to be rising- we're all going to hell in a handbasket anyway"or" Why are you comparing the two?"

No. we aren't going to hell in any handbasket.
We aren't if we don't want it.
And boardwalks and those children are the same. Because they are both surrounded by a human community of caring people that has been turned up lately. And for that I am grateful that our human race can at least find that.

Between Sandy the storm, and Sandy Hook's shooting- the emphasis of healing has been community.
Not any CEO or rockstar, or law or cry for reform.

Community.
Each other.

Not just our immediate families, or blood families- it's our human family.
We need each other more than we like to admit. Or ask for.

Yes- there will always be those opportunists, assholes, and those who just don't get it....but maybe doing a little bit extra for your fellow human might help them "get it" in the long run. You never know what will inspire someone. Especially in the wake of such tragic events.

While the apocalypse tale goes around--- I don't beleive in the the proverbial end of the world.
I believe in the beginning of a consciousness of loving each other. and respecting each other.
I believe in the goodness of all human beings.
I believe in the community that has been built.

It's the key, it's it.
Between keeping eyes out for our towns or our own families, I think we need to involve ourselves more in what we do for others.
This is a not a call to do more, or donate money or time= this is a call to engage your mind and good thoughts every time you do anything. Washing dishes even.
If we all act with conscious thought and put our own good out into the universe- we can change it.
We can change the way we think, and treat our children's minds. Respect their nature as children and not try to change their developing brains with our adult medications. Listen to them. Spend time with them. Look out for other children. Be INVOLVED.
It's easy to give a child a TV, or a smartphone or computer and say "occupy yourself". When it is not coupled with actual family interaction in any sense at all, a family suffers. Truth.
In addition- the way we treat illness in this country- mental and physical - needs to be looked at. The motivations of drug companies and some doctors should be questioned.
There are children whose very brains are at stake. Cancer patients whose bodies are being created into slash and burn forests because no one cares to understand the workings of illnesses. We just want to throw pills and money at the problems, with no regard for causes. And that's what needs to be looked at. People die unnecessarily because of sidestepping unscrupulous medical practitioners and lack of explanations.

the answer?
Love more. Care more. Research more. Everyone.
Whatever it is in life.

I have been crying every day for these poor children's parents. the family of the shooter. The families here at the shore, the lives and homes lost- It is too much lately. But look at what is helping and it's the community. everywhere.

Maybe we should all try a little bit more to be better parts of our own community.... for the ultimate benefit for being good family. which is all that it comes down to.
Don't want the handbasket.
Don't be the handbasket.

the iceberg.

Feeling a little bit better in my head today- yesterday's post was pretty cathartic for me just getting that out.
Fo rmy readers, please know that I am not crazy- this is probably a good documentation of what having cancer does to a person. It turns even the most sane of people into themselves.
Well- maybe I am crazy. Good crazy though..
Seriously. I even saw it in my father - one of the strongest people I know, who dared never show anything as far as weakness. He still did though.
We are all human.
No one is super, no one is so magnificently immune to anything. We are all flawed, either in our genetic makeup, our thinking, the way we treat the earth and each other.  Even the pious are flawed.

Strength needs time to take a break.
The iceberg that all us cancer patients are (I will always consider myself a cancer patient for the reasons following) are weird and funny. We have our own stories that we are so ferociously protective of- our own experiences whether we choose to share them or not. Our stories are ours alone.
There are people who have cancer that prefer not to tell anyone. For some people, blogging it out to the world is the way to help them cope and possibly help others.
Every single one of us is different. I've read a few blogs by some cancer patients, and 'survivors' who look at others' descriptions of their cancer trip. People get irritated sometimes when others refer to their trips as "journeys" or "battles" or "fights" or whatever. Another Op-Ed piece writer from a newspaper pointed sarcastically at the woman who called her cancer a "gift". Sorry to say it, but lady- I know you were there too- but it is a gift for some people. I even call my own cancer a gift sometimes. A sick and twisted bad gift- but I learned from it, personally. so much.
I've used all those words. I don't care. I don't ever feel like I "fought" - like I physically put on gloves and really hit something. Or squished my eyes tight and made that ":errgh:" noise---- but there were plenty of moments where I wanted to lie down, but it was never an option. It's not giving up that is the key, regardless of what you call it. Struggling though, I have done plenty of.
We cancer folks are fierce in our own defenses. Between cancer, and the poking and prodding constantly from the medical community- who can blame us?
I remember before all this happened, I too was guilty of that "oh I am sorry" when I heard someone had cancer.
"Oh god" you think.
and your mind goes to the worst.
And I said "Let me know if there's anything I can do".
OOOh. I wish I could take that back even thought that sentence is a knee jerk reaction to anyone's misfortune. I'll be honest- it's an empty promise. I am never going to ask for help. I'm already down- the last thing I want to is ask for help.  It's humiliating. I am not a fan of holding my hand out or speaking about my financials, or even asking for something to be picked up at the store. That is not me.

There is so much to a person when you have cancer, that you only actually see that 5%.
The iceberg.
We hold it in, we want to ask for help, we want you to listen to us whine incessantly about chemo, we want you to see the giant hurricane of thought and hurt and love and healing inside. Our thoughts are invaded by cancer so uch of every day. We can't shut our thoughts off. We are now part of this special club that gathered on the Grim Reaper's front lawn. It's a pretty nutty crazy train.
But since our compadres have never gone through it- why burden their lives with our experiences?
 So we don't.
We chug on, becoming stronger every day that we have this bullshit inside.
and certain cancers have their stereotype.
Hodgkin's is the "good cancer".... Breast cancer is the pretty pink ribbon cancer. Prostate cancer is the easy guy cancer  where the guys grow mustaches for a month. Anyone suffering from any of these or any other cancer is disrespected by those stupid labels. It is never ever easy, good, pretty, or anything nice or fun. at ALL.
I hate my stereotype. I will never ever like the pink about it all. That's like bringing balloons and a clown to a funeral. Or using comic sans on a death certificate.
I feel guilty crowing "I'm cancer free!" when I know a few women with Stage 4 that will not be able to say that. I never realized Stage 4 breast cancer was it. I didn't know that until after my diagnosis because my whole life, society painted it as easy and pretty, easily beatable and something you get after 40 and so nice and pink and squishy.
 I never knew the horrorshow it really was until I got it. If I did- I would have gotten my annual religiously.
I was Brianne the Invincible. Still in my 30s, with little kids. Cancer isn't going to get me. Maybe my arrogance caused it.

I think people have this idea that you get cancer, you take all your meds, go through the chemo and then once you get your "all clear"- you are done. discharged from the Cancer Military, ready to go out into society. all done. Go live your life. Cancer has been beat!
So not true.
Some of us have this forever, even when the cells are gone. That thought in the back of your head all the time---- You will never see the scars under our clothes, in our heads and hearts....Or how my armpit and breast were entirely removed through the hole they cut my nipple out from. My stomach butchered. My body is just a stitchy meat map at this point. I have no feeling in my chest or stomach. No feeling. Uncomfortable 24-7.
"You look great!"- I like that- I say thank you.
I don't FEEL good. But If i look good, then great- but don't assume I am 'all better'.
I get looks when I ride the motorcart at the supermarket or park in a handicapped spot because I don't "look sick". The smiley comment:  "Oh you got perky boobs and a tummy tuck, what are you complaining about?" ... That comment makes me want to retch. Is that hot or what?
I know I make light of the boobs and flat stomach, but I was not magically transformed into Pam Anderson overnight. I joke. I laugh. I'm NJ. I'm sarcastic and full of love at the same time. I mean no ill intent, I just want to show this rawness inside somehow.
But in all seriousness - it's serious. I'm chopped up and sewed back together. Picture Texas Chainsaw Massacre.
Do the perky boobs and tummy tuck still make you laugh?
Wanna tie a pink ribbon on it and parade it through the streets? 
No. NO. NOOOO!
We are silent, but we have whole icebergs inside just melting and crashing and breaking.
There is so much inside, so much... for all of us.

ah home.

Home....home again......

I am now permanently home.
No more hospitals, moms house, reclining chairs......

The house is clean, and I love it here. I loved my moms too but I needed to be home, as did my children.
It's a little transition now that home is home and not someplace else. It's like "Ok- so what do I do now?"
I sit and wait. Not being able to grab much of any proverbial ring.
My date to go back to work is a tentative Jan 4th, we have to see about that.

I had a sad time today when I finally made it to the radiation oncologist- to set up our voyage into radiation land- and as the nice lady named Isabella and her CAT scan guy were making the mold for me to lie in for 5 weeks and ready to CAT scan me- They told me I had to hold this ring and hold my arms over my head as the mold was setting. I kept saying that I couldn't. And I was told to "just try".
I can't. I tried, and even though I told them- I couldn't do it.
So I now am in push mode and need to get my arm over my head by next Wednesday.
It makes me want to cry that I have to do this.
It hurts terribly, I ran out of painkillers, and I just don't want to. But I have to. I'll take a fragile moment coupon pass for this and proceed to sulk over it. and cry and whine.
Why don't they take this into consideration, this whole lymph node removal?
and It felt like I was the first one to ever walk int there with this problem. At least my breasts fooled the radiologist. again- this surgery really is rare, I guess. He thought they were implants.Score anothe rone for ice cream.
I wish I lived closer to Mount Holly so I can keep going to Virtua but it ain't gonna happen.
I want people to have their shit together- because when it's not and my LIFE is being dealt with- I get a little freaked. If I wanted to be freaked, I would have stayed local for my care. so there ya go. Reason #1 why I drove the miles I did. Jesus Christ.
gah.
So I am home, walking more upright every day!
My stomach and bellybutton are pretty much all healed up- I still have scabs on the boobs. Delightful.

It's all so much when pretty much most of it is said and done. I know I still have rads left, but I got so settled into "having cancer" that's its a strange shift settling into the role of "not having cancer anymore". I think a lot, and I cry a lot too. Must be the moon but this new life is way more overwhelming that having cancer, even. Hard to believe, but it's a life where you have to watch and worry about every ache, pain, lump or spot.
I don't need any more adding to my neurosis. And I can see the frustrated reader that just wants to punch me and tell me to shut the fuck up already.
I tell myself that all the time.
What to do besides carpe the diem and wait to die from old age.....?
People have said to me "You can't sit and worry about it all the time". I don't. I express how I feel and it's perfectly valid. Expecting a cancer patient to be happy and upbeat and positive all the time is a myth. I get my moments. I charge through this shit on a mighty horse with a sword and shield, but that does not mean that I do not have soft and squishy insides and a heart and a mind and rational thinking too.
I don't worry about it all the time. But it is a major thought- and there is not one person to understand it unless you have gone through breast cancer too. That's it. Let me think about my own life in my own way.
Depression can be an easy cave to crawl into, I'm finding out. You go through a whole mental and physical war only to return to a place where the 'old you' doesn't fit in anymore. And you don't have gobs of cancer patients waiting for you upon your return for help or support or any understanding as to how this all feels. It is so much.
I need to be able to get out of my house on my own terms, I think. Having to be driven everywhere or stuck inside in the rain is shitty.
on the up side (because there's always has to be an upside or who would I be?)----My hair is growing back nice and full and ashtray colored. And I now have all my eyebrows back. ALL my eyebrows. I need to pluck them before I get mistaken for Frieda Kahlo or Oscar the Grouch.


Next week is another visit with the boob doctor and hopefully the radiation people again if I can get my arm up over my head comfortably.
ergh.



....
onward, right?
onward.....

thanks, water

Y'all have to pardon me lately-
My typos are there, as is the occasional absence of a space- my mom's keyboard here has been touched by a 2 year old. Melody dumped a can of 3-in-1 oil into  it (still works) and managed to rip 2 keys off. Unimportant brackets, but still- she did her damage. The spacebar doesn't work very well. I do my best to proofread, and keep the mental train on its tracks..... but I need a good keyboard to blog these- so pardon the watered down posts until I get back to my clickity clack keyboard.
Cancer is just like a 2 year old- destroying whatever it wants....not giving a shit what it does or its consequences.
i think I have said that before.

Solace is only in 1 spot.
The shower.
Taking a shower is my me time. This bullshit Oprah says to "make an hour of your day for YOU" does not apply to parents.I do not care how much I have to say "Ya know what- I need ME time!"- I will never get it. There is no me time. It's whenever I can get a free minute to think past bedtime.
So I take a shower.
I think, I cry, I meditate, I invent, I make peace with my body, I read the Bronner's bottle.
I said goodbye to my breasts. I was able to stand up in the warm water after surgery, it helped me in pregnancy and toothaches and late night ills and it was a place to go to warm up when we had no power after Sandy. That shower has always been there for me.
All that stuff- and I feel rejuvenated when I am done. There is nothing for me that a good long hot shower will not fix. Besides a late bill.
I love ...the shower.
All those Neulasta shot nights, bad chemo nights, the terrible leg pain, the sadness you get when it all caves in on you for just that day - just hop in the shower.
I give thanks for that water. That time. That only moment of solace in my day.
As long as the shower is clean, I am good to go.

hydration. shower. hurricane. It's a powerful thing that water.
Tomorrow-my shower is going to be mine again and we are all finally going home.
My mom has been great here- but the kids need their own spaces, Mark & I need our own spaces, and I just miss all the smells, and food, and my blanket. I just miss home.

Renewal, I feel.
I feel like I got that one chance in life (as unfortunate as it is) to start over. Clear it all out and start anew. Like razing a plot of land.
All that gunk inside, the weird breathing thing that I had for a few years, the bizarre green boogers that never went away- all of it is gone. I get to start with new hair, new insides, new everything. Granted the shit was posion and won't leave my system for a while- but it's a cut n burn.
I can only wonder what this new life will bring.

My mind is clear-
really nothing bothers me like it used to- it really is all small stuff.
In the big spectrum- tiny problems don;t deserve major play.
conserve your resources!!! LOVE!!! stop spreading hate and shit and stupid complaints. For reals.
Other people have it worse. trust me. Why bother, really?

I don't even feel like I even should be bitching myself because I have a home that I live in with all my stuff to go back to tomorrow.
Some don't have that.
And my cancer is gone.
Some don't have that either.

Ok. STFU time.

getting back to the beginning of this post- my typos are also caused by that lovely chemo brain too. Or anesthesia- I don't know what- but it's at the all time high - Dropping things, no coordination, no being able to find words..... Instant Dummy.
My head is not my own- I really hope that fog clears soon.
Arm is getting better! I am able to finally change a diaper! woohoo!
Still in no way ready to reach high- but I can change a diaper. That whole BS about not lifting over 5 lbs- ha. that didn't last long. I am not carrying Melody over long distances, but light quick lifting is what I do.
Real quick.
Don't tell a mom not to lift over5 lbs for 8 weeks. lol. yeah. right.

Overall- my time here is nigh---- I'll enjoy this last night at mom's - hang with my mom and the girls waiting for Mark to get back around 10:30. Recliner sleeping will be no more.

I also waited on my starting my Tamoxifen till tomorrow.... To keep the 9 going....
Radiation in 3 days. EEEEK.

onward.
loveyou all- have a wonderful evening.
(I type better on better keyboards-lol)

xo
b

the bionic woman

Oh Lindsay Wagner.
They don't make actresses like her anymore.
*sigh*
My sister used to make me watch this show all the time when I was a kid. I love the sound she makes when she jumps.
I still hear that sound when I get those awesome moments where I can stretch my right arm a little bit more or being able to reach a little bit farther.
If I feel inside my armpit where the Shitshow used to be, it is now completely numb- but there is a very large tight feeling "rope" inside. I assume the doctor just gathered all the loose ragged ends and sewed it all up. Tendons in my forearm that used to run north to south are now all slanted and twisty and painful. Rerouted nerves make for weird occurrences- such as me scratching my shoulder and feeling it in my foot. Or touching my earlobe and feeling it in my elbow. Strange. I have also lost much of my sense of smell for whatever reason...maybe the anesthesia?
But everything is healing up nicely incision wise. This guy pulled off some serious quilting skills in his invisible stitching. It's leaving hardly a giant scar at all.
My fellow sewers would recognize this work as some of the best hidden applique stitching ever. I wonder if they trains surgeons using quilting classes. I think they should.
Just feels all weird inside like ropes around my rib cage- half numb. My belly is healing well- almost all the incision scabs have fallen off.... Every single day is a different facet to healing from such major surgery--- One day you'll feel your entire stomach lining ripping and stretching inside all day. The next day is the odd belt that is tightened under your arm and across your chest inside you. ...... and the tiredness of walking after a half hour is extreme. After all that chemo and stuff- I have to say that this recovery is the worst part of this whole story so far. For me at least.
 - Not being able to walk upright- I get a few moments to stretch to what I can tolerate and it's crazy. You definitely feel it everywhere. And I feel as if I was sawed in half. My stomach area looks weirdly ...shorter. I cannot describe it but I hope it goes away with stretching skins and spines. It's weird.
Healing up the arm is going to be the biggie.  What else was a  little weird was my full pathology report. Ugh- so descriptive. Skip to the next paragraph if you barf easily.
My pathology report actually described what the Armpit Shitshow and breast tumor looked like..Ugh.
After all that chemo there were still 2 tumors left- both 'lumpy and a tan/grey color'- a 2cm one in my armpit and 1.7cm one in my breast with a network of stringy stuff in between the two. The path report described it as filled "creamy fluid". THAT IS SO GROSS. ewwwwwwwwwwwwwwwwwwwww.
Unnerving a bit since after all that crazy shit drug rollercoaster of 140 days- that cancer was still there. Holy moly.
So I am getting there. Slowly.
Still at mom's.....but these past 2 days have been so much better mobility wise. Which means I can go home soon and do my best being alone with children (changing diapers, etc) when my husband goes to work at night. Only rule is no lifting over 5 lbs. It's quite the challenge.And no sleeping flat.
The kids and Mark have been great. They camp out at mom's right with me. Azalea has slept next to me every night except for once since I came home from the hospital. Melody has started doing the same thing on the love seat lately. Mark sleeps in the spare room and I am still in the recliner in the living room. I really miss home. I'm actually home for a few hours now- we have been shuttling back and forth this whole time,. but I miss my HOME. My coffee. My bed. My kids are around- I do what i can with one good arm and we just get by thanks to my mom and husband between baths and diapers and stuff. I can help with homework, make earrings, and color and draw. and tonight we're going to try and use a sewing machine. It's major arm work..... let's hope for the best. Psyched to be sewing with my mother the seam queen herself too.
I love my mom--- I do I do I do.... but I miss our home.

I've been getting out more too- those mobile store carts rock.
Toys R Us does NOT have them though, but I did good with a sturdy shopping cart.
The armpit area is crazy though. Hardest hit.
I visit my chiropractor tomorrow to ask about physical therapy recommendations now that my movement is improving and I feel better.
Pillows are my friends.
I have also come across the retail trap of "special womens things". Stuff women need for only small parts of their lives- like nursing, pregnancy, cancer, etc. I don't fall for this crap.
Thankfully my nursing bra from Melody was comfort. But I had ditched the rest of the ones I had.
Up and down- 34.00 nursing bras, blah blah blah. online, instore- the whole retail rhetoric they throw at women is insane.
Till I went to Shoprite. In their gloriousness of an actual sock and underwear aisle- I accidentally stumbled my mobile cart through..... I found the 9.99 2 pack of Shoprite bras were perfect. Functionally hot if that says anything. (They are hideous...and the most comfy thing I have ever worn)
So that's my secret.
Double mastectomy? Shoprite bras.
Special women's things are big business. Don't let them cash in is what i say.

The end product is healing nicely. Still with a little hematoma- but really nice.

And the end product brings with the rest of my life people staring at my boobs forever when i tell my story.
Don't lie- you do it too.
When you hear someone has or has had breast cancer, you look at their boobs.
Fact.

Laugh....because I do.
It's so true.....
Technically- I wouldn't call them fake, since they aren't. It's still my stuff, just in a different place. Organic Migratory Mammaries.
Hot. I know.
A long road to looking normal or real at this point- but I'm happy that evil shit is gone, they are gone, and the healing beginning.....
Go forward.

same as it ever was.

Just hangin' tough.
Getting better every day.
I have to keep reminding myself that I am on the mend. This usual ADD of myself I have is ITCHING to do things. To get up and drive. To do the YMCA.

ack. I told Mark this is the perfect time to go on a Caribbean vacation since I am actually relaxing for a change because I have no choice.
Stay medicated and stay active.
I am getting up and going outside for a little bit- I can't do shopping unless I have one of those motorized carts. To which I need to bring bleach wipes (because I'm Italian neurotic). I haven't done it yet- It was raining nasty yesterday so I stayed in the car while Mark ran into Lowe's and Costco for some groceries and necessities for the new clean house I am going back to. I feel like I just need to be able to sleep a bit better- It's a slow road, but I am still very much in the recliner - sitting up causes pain on my back, My numb armpits  need to be elevated.
When the pain gets real bad, it feels like belts made of broken glass around your lower stomach and across your chest under your armpits.
I am feeling the repercussions of nerve damage from things done to my chest insides while I was asleep and it's kinda scary.
I picture myself as like an ice cream counter all splayed out on the operating table.Scooping out here, stuffing in there. Eek.
I can only wonder what it must have looked like, Jesus.
It hurts.
My kingdom for the ability to walk upright.
My mom tells me I should have a magnifying glass as I hunch over all around her house.
And I'm still at her house.
It was awesome to see 2 sisters and a brother, and a nephew, and 4 nieces. and 2 brothers-in-law.
and a Grandma.
All came over and stayed for a few days during Thanksgiving. I know how the Thanksgiving turkey feels all cut up surrounded by family. That was pretty much me in the recliner in the living room.
Nothing felt so nice as to be surrounded by family at that moment- giving thanks for what else- LIFE. a second chance.
My sister and brother weren't able to come up - but I should see them soon anyway.
Today is actually my little sister's birthday- 29. I remember being 7 when she was born, and holding her in the hospital. My little baby sister.
Time goes by so fast.

I have lots of it these days, most of it is spent under the influence. or in discomfort. But the other option is worse- and I am grateful for the trip I am taking right now.
every minute.
I have lots of time to think about how life is going to be as it transforms into a new normal.
What I am going to do with my time besides healing- Will I be able to tie dye again? Paint? Batik?
I hope I find a good physical therapist who can get my arm back to normal.

not having my right arm working is very frustrating.
Getting better every day though. slowly.
I have anxiety over not being able to function as part of my family. I sit there while other people rock my baby daughter to sleep, or give her a bath..... I am grateful so much for the help- but the inability to be physical with my kids really hurts.
I can't hug :(

I am watching lots of daytime TV. to which I have to say that The Talk is the worst show currently on. That I love Ellen Degeneres, Fox News is poison, and I love CBS news. and the DIY network.

Slowly getting better.

I am also down to about 2 pain pills a day- which those are usually at night for sleep.
The mary jane cookies are taking care of any mood swings, I do not have menopause symptoms or chemo side effects when I take them, and my pain level is much lower.

I am still in a lot of pain and far from normal, but slowly getting better..................slowly getting better.
and the joy of having eyelashes again is divine. <3

I get to visit my Korean eyebrow lady again soon :)

xo

b

Star Wars Cantina Makeover

That butt pillow advertised on TV? Forever comfy. I desire forever comfy -If I order it- I wonder if it really works.

Hard to believe 12 days has flown by since surgery- I am still very well on the mend- but farrrrr away from an inkling of independence.
Good news though- I got my drains removed yesterday- which is the weirdest thing I think out of anything thus far that I have experienced.
I had tubes implanted - 2 under each arm and 2 in my pelvic region to drain the fluid post surgery. It was gross- I had to milk and empty those drains every day. UGH.
My poor mother the paramedic was even grossed out by that.
a few times- I yanked the tubes accidentally- causing some serious pain--- they stitch the tubes to your body.
The whole time I was feeling them and was pretty sure they went in about 3-4 inches past the incisions.

Yesterday's removal proved me wrong.
try a FOOT of tubing.
Yo.
a FOOT.
All this time- I had 6 bulbs that collected the fluid - hanging off me- a real challenge since I had to wear them in a bag around my neck 24-7. The tubes would rub against my belly incision - during sweats- it was just gross.
So they pulled out the tubes yesterday- all went fine until the last pelvic tube was pulled out and holy lord- HOLY LORD- it was pain. It felt like it had been stitched to my stomach from the inside and they just yanked it out. I still feel it now- in my HIP.
Dr. Patel's PA said scar tissue was probably forming around it - he just pulled that sucker out. I watched Mark's eyes as they did that- and i YELLED. I yelled so loud the doctor came running into the exam room asking if everything was ok. Oh boy that hurt. It was funny though. I apologized up and down.
whoa wow wow.
Glad I do not need those things ever again.
They also took out the stitches that attached my new belly button. He was pulling out the stitches with scissors and I just wanted to be like " A seam ripper would make your life so much easier" - lol. I'm in the business of stitches. Seam rippers are a requirement.
But this guy did a good job- the rest of my stitches dissolve.

Both my breasts are healing well- one side was abnormally larger and quite black and blue compared to the other one- PA said it was a hematoma that developed during surgery and it won't go away for a few months. Yay.
And thank lord again that I do NOT have to wear those compression bras they give you in the hospital- I was given the green light to wear my nursing bras from Melody- Oh happy day.
They aren't sexy- but they have somewhat semblance of being a woman with cleavage much more than the giant velcro road block I was wearing before. wheew.
So I think Breast Cancer surgery should be renamed  to Star Wars Cantina Makeover.

Between the drains, weirdo nipple-less stitched up breasts, reattached belly button, and everything chemo did to my appearance- there is no name for it other than Star Wars Cantina Makeover.
I guarantee next to that Cantina is a salon- where all those creatures look like me right now.
I am still at my mom's healing-
It is going to be a very long process. Very long.
My mom loves her Fox News Channel.
I'm growing accustomed to the Fox News. a little bit. What a bad thing for America, that channel. Kool Aid Cult. I actually sympathize with the responsible and well thought Republicans that have that channel as their official mouthpiece. I'd turn Independent. UGH. ( I am currently independent. fair and balanced my ass- News Corp should be brought up on charges of how much they lie. not news)
So it's caused a lot of heated arguments- but I am making my points, proving what that stupid channel says is wrong or propaganda.... Like I said before- I love my politics.. I hate spin.
They do have a few people who actually have a brain that thinks, rather than regurgitating information- but they are few.

I am bonding more with my mom than I have ever done in the past- and it's nice. My family has been camped out here too - Azalea wants to sleep next to me every night. I am still in the recliner in the living room.
I miss lying flat or on my side- I cannot do that at all.
My back is suffering.

I am just so glad I don't have to haul those drains around anymore. I felt like a Macy's Thanksgiving day Parade float for almost 2 weeks.

I am healing well- but very slowly- this surgery is intense.
I met with Phyllis and Dr. Cairoli for a bit on Monday- I am to go forward with the radiation (no surprise) starting December 11th, and Phyllis told me I was ok enough with my hair to use a color rinse if I wanted to . She said she didn't like to see me with grey hair.
My hair has been growing in like the Italian champ it is. and EYEBROWS AND EYELASHES! they are starting to come back like Pumpkin Flavored Everything.
YAY!!!!
My hair is a fluffy pile of white and grey and light brown and blonde- with darker roots coming in now- it feels like cat fur.
Not quite Tony Danza, but a shorter Jamie Lee Curtis.

Color rinse, please.
Teal or dark blue or purple would be great.

I am going to wait till it gets a little longer and I get my eyebrows back at least.
Almost there!

Appearance aside, I am still very much in pain and a slave to the pill. blah. When I get better enough to go shopping and start flushing this crap OUT.

I also have to be on Tamoxifen for 5 years- Tamoxifen is kind of like Chemo Jr. --- if any breast cancer cells show up again- Tamoxifen shuts down the receptors on those cells to not feed off the estrogen and progesterone that the old cells were growing from.
Good times.
As someone who has had barely anything but an antibiotic prior to this, it's a defeating blow to someone who took such good care of herself generally the whole time. I have to take them though- I have a husband and small children to be around for.
I need to get old.
I don't want to die from this.

What a hurricane.

I know how the United States feels- my armpit has been ripped out and shredded too.
I resemble the shore myself- scarred up and rebuilding. The irony is weird.
not to mention that hurricane forms a number nine in its spiraling. wtf?
I told you- I have apocalyptic boobs.

Mark took me around the shore to get out of the house and besides being upset that there is NO place to sit and watch the sea anymore, there is still so much destruction and garbage everywhere. I start crying every time I see it. My poor state. My poor shore.
My mother was very lucky in being 1 of 4 houses that didn't get flooded in her area- as she was surrounded with about 50 houses that did (she lives across the street from the creek that overflowed 11 feet) --- All I have to do is look outside and see the pile of trash in front of the neighbors' houses and it all comes back.
We are still so raw, still an open wound.
I know how you feel, shore.
I'm healing right with you.
I'm limited in my being able to help- and it is a shitty feeling.
Thanksgiving is tomorrow---- My grandma turns a hearty 85, and my sister Britt is coming up again from NC as is Jon from Brooklyn. They finally got the trains running so I get to see my baby brother who was so close, yet so far away this whole time.
So happy to be around my family.
I love them so much, it makes me cry. I am blessed and lucky to have siblings like the ones I have.
awesome. and we're all fun crazy.

Lately- I have been on the receiving end of some of the most amazing support and love I have ever seen- tears emerge from even the thought--- Thank you everyone for the love, the cards, the help, the little baskets of goodies and groceries, the food, the semi-hugs, the visits to decorate my walker, - just everything. Even the little hearts on facebook and message boards- everything.
My heart swells so much.
and I am so grateful. and every bit has been such a help. seriously.
Sandy took a lot of work away from Mark too - so it has disabled a lot across the board- but we still have our home. Thank the lord.

I will be blogging this forever, I see- there is no end in sight at this point since this will be a lifelong battle. Lets' shoot for the next 50 years of love light fight.
People have been telling me to make this into a book.
any agents out there? lol--- email me!
..................

So much love and gratitude to all of you- keep shining~*
xo
-b

like i said- GFY

cancer. free.

I HAD cancer.
I fucking beat you!!!!!

Pathology results came back last night and I was officially given the all clear by the fabulous Dr. Miller last night.

It was a blessed minute in the midst of a horrible confusion. Nobody said what anesthesia and drugs to do you. Probably I'm taking it worse since I was never a Rx person- It was the grand hurrah of the end of 6 months of SHIT my body is going through.
Since surgery- besides being in horrible pain 24-7- my nights are filled with pyschosis. Like bad psychosis.
Waking up and freezing, even though I was in room temp. even with 5 blankets on me, I am still cold. Then I start the sweating.
Then my head goes into "caged animal who can't do shit" mode and I go nuts- I see things, I have nightmares, I'm trapped inside a container.
Last night's adventure involved horses with clam faces eating my stomach innards, Etan Patz sitting in front of me, and a crazy woman who was also in the room with me saying all sorts of nasty things and that I was worthless piece of shit and didn't deserve to live over and over. I couldn't make it go away.

I flipped out yesterday on my family - I don't remember most of it, but I remember screaming at the top of my lungs, yelling and carrying on and crying.

I was sleeping in my dad's chair last night, the same chair he had to get when he had cancer- he spent a few nights in here, he loved this chair. It was a bittersweet morning of opening my eyes and smiling that I had done something he couldn't. And I did it for him.

Pretty much I can't do anything. My right arm is like a T Rex arm with weird numbness and - pain- as you can see from my drawing skills have quite diminished.  Thomas Kinkade is dead--- I would have some serious competition there for a second.
I cannot walk upright and my wounds go from my gut to my breasts, and into my armpits -the side that HAD cancer in it, my underarms feel weird inside- I can feel muscle tendons stretching and pulling--it is crazy weird.
My energy is hardly anything. Let's juts say I have a pretty good functioning set of legs and face. lol.

Ugh. and not being able to leave my home (or my mom's in this case) is frustrating.

and I'm loaded on Percoset.
I HATE DRUGS. They can save your life, and destroy it at the same time- I just hate them and wish I didn't have to take them- and anyone who finds this painkiller shit fun- I wonder why.
They suck.
I was never a fan of pills.
I cannot wait to stop these and cleanse my system.
My kids are suffering too - Melody is sick, getting molars and dealing with the fact her mom can't hold her. Not holding my kids has been the worst part of all of this. I can't even have them in my lap because of all the drains and stitches. ugh.
and they want to represent all of this with a pretty pink ribbon? FUCK THAT.
I hurt for the women doing this who can't escape the cancer. who can't ever say "I beat it". Let's find what causes this once and for all and get the pharm companies to lie down for a change. They created this whole pink ribbon bs in the first place.... the whole thing is disgusting, horrible and gross. Far from pink.
and through it all, I'll let y'all know that I rocked the weed. Medical Marijuana helped me work through chemo, sleep through bone pain, not be a zombie for my kids like Vicodins did, and created some sort of normalcy. and people like me and worse are forced to take the legal medication and go through shady channels to get the better medications. I did it with pot. (I finally told my mom so I can say it here too.)
Legalize that shit already. jesus christ.

But I still have the joyous news. I HAD CANCER.

And when Miller finally opened me up and took out the Armpit Shitshow- he had no idea just how many total lymph nodes were there- everyone has their own special number. It's just a chunk of fatty tissue that they take apart in the lab.

How many lymph nodes did Brianne have total in the Armpit Shitshow?

9.

and 1 had cancer left in it.




go fuck yourself cancer.
DONT EVER MESS WITH JERSEY AGAIN.


xo
- the torso.

& what a zany torso it is!!!!

Hiiii alllll.

4 days post surgery----- and all I gotta say is Wow. If I thought chemo was crazy- this is probably crazier.

I went into the hospital for a quick radioactive injection the night before----  and we just all had a great dinner out at the Vincetown Diner (best NJ diner EVER) and a nice family night in after making it back to a nice Hampton Inn suite with my husband and children for the night. My husband and I just held each other until we went to sleep. The previous trip of the day finally put me at ease and ready to do this.

I figured I wouldn't even be awake for the scariest part if it- so why would it matter anyway?

Friday morning::

I woke up refreshed and had about 45 minutes to get the family up and out- my mom would be meeting us there at 6:30. We made it to Virtua at 5:45/ AM. Opened the bar we did.
A whole bunch of pre-prep- meeting the anesthesiologist-It felt like being prepped for a press conference or some shit like that. crazy. questions I have answered 100 times. All that worrying about the last bits of glitter toenail polish I couldn't get off and they stripped me naked and then put 2 big pairs of socks on me. wtf?
My husband watched as Dr Patel came in, said hello and drew all over my torso with a marker and Mark said he would punch him if he was any other guy. He asked if I had any questions and I just said "make them as large as you can. please.... I ate ice cream all summer for this!!!!!!"
and ya know what?
He LAUGHED.
I got my wish.
Dr. Miller laughed too. and then told me he had a patient once who complained about them being too big once.
It was a fun uncomfortable jovial moment of being the only female in a crowd of about 4 men who were about to see me naked and unconscious on a table and my husband.
My plans set- we went in. The last thing I remember is George Lucas Anesthesiologist commenting on the dancing bear tattoos. A kind of secret code for us deadheads to identify each other in times of seriousness I guess.
Alien probe lights- the operation room was massive. and with a LOT of people. and hemostats.
I started to get nervous and cry- they told me to stop and I don't remember much after the oxygen mask went on my face.
I barely recall dreaming- I do remember one last thought of needing to shut a dresser drawer because surgery was over.
I hope I get more details of that.
OUT...
after-I was wheeled into a gian troom with the other alien probe victims and I got to see my mom, husband and 2 kids who had waited patienly for 8 hours for me.
Good family I have,. I just love them.
so much.

I spent the frist 24 hours in the ICU- discovering all the new things that were done to me by doctors and techs. I had a catheter (ew. glad I was out for that one). I had been sliced from hip to hip. They pulled my skin down to about hip level- using the leftover skin to sew on flat blank nipples to replace the ones they removed. I got a new bellybutton sewed on too. And drains.
I woke up to a slightly larger set of crazy horror movie looking breasts- peeking out of a seriously gauze packed compression bra. They cut holes int he nipple parts so the un-nipples could peek out for testing.
The offical surgery is officially a DIEP Flap surgery. Google it to see what they did to me. Good times.
Basically what they did was take every bit of fat out of my belly- then sew it down as tight as possible, reattached a belly button. In the breasts- they cut a hole and dug out my old breasts, and made new breasts using the fat-with Dr. Patel actually creating a new vein and new artery for each one. Blood supply needs to be had for living tissue to do that.(The man proved himself to be quite the tailor) Nice stitch work.
And drains.
I have tubing coming out of 6 parts of my body- 2 down below the abdomen stitching and 2 under each armpit. They are attached to squeeze bulbs that collect drained lymphatic fluid and blood.
Naked, I look like some creature that walks into the bar in Star Wars. For real.
here's a weird hand drawn diagram....strange and badly drawn for educational purposes only.(foot has been shown unedited for lack of eraser only)
All the cut up and sewn areas.... IT MAKES A HAPPY FACE! :0)
isn't it twisted? (bruises and nicks will be left to the imagination- dotted lines indicate where the deep stitches are)

I was kept in the ICU to monitor the arteries' blood flow (with a Doppler every hour) and then moved to the regular floor for 2 more days.
I was harrased by phsycial therapy (I walked a whole bunch. It is very difficult at first- but it is necessary to hunch over because standing up tall with rip out abdomen stitches), experienced some of the best nursing and nurses I have ever had, and was prepared to go home with a new body and patiently await pathology results.
Even though I did not put any religion on my paperwork- a rabbi came into my room and we interdenominationally prayed. in Hebrew.
It was great.
Dr Miller came to see me and pretty much let me go Monday- we both kinda didn't want me to be there any much longer as the hospital floor was very crammed and small and not kept very clean by maintenance.Plus he told me I looked awesome and was recovering a lot faster than most- and to enjoy home instead of a sweaty nasty hospital room. I was thankful to have a private room up until the last day I was there.
Privacy in this kind of state is essential.
What i was mega grateful for though was that I was next to the window and YOU COULD OPEN THE WINDOW. Hospitals do not usually have this. Happy DAY. with a strange 3 nights of mild weather- sleeping next to that open window was a gift. I probably flashed my sewed up torso tons to Madison Ave of Mount Holly a lot too. I don't care. No one would throw beads at this cut up flesh container at Mardi Gras.

I have no feeling at all in my chest or left armpit area. Eternal novocaine numbing. all gone.
I have to walk with a walker until I feel better and I'm being fed painkillers constantly. It sucks. I won't lie- but I'm glad I didn't have all of my hair during this. and I'm glad I did the chemo first.

now we wait for pathology.

Dr Miller should call me with results any day now.
I am currently recovering at my moms, who is making sure I have hot meals, clean sheets and clean surroundings. The care is great. My mom has been the best.  Someone give her vacation please when we get past this.
I am far from any type of partying or having friends over for wine or anything remotely resembling that. I just had a surgical hurricane hit my body. Done, there is no ladies night for this at all. You have no idea, friend who made light of this and thinks next week I'll be down to "hang". NO.
Overall- this is the next to last step for my immediate journey- but the reality is I will be fighting this for the REST OF MY LIFE. It will never go away and threat of its return WILL ALWAYS BE THERE.

....
as of this typing- I am very exhausted- starting to hurt and needing bed- but I just wanted to update y'all on what's the haps so far , how it's going and all that.
My husband needs sainthood after this in case anyone reading this is in the canonization business.....



More later...... I am tired and NEED BED. Torso needs a new day to heal.

life goes on tomorrow~

much love*
b

Fight Test

Ok- Maybe I lied.
That wasn't my last blog post before surgery.
This one is.
I had so much today but didn't want to make you sit there and read endlessly about the jersey shore, hurricanes and cancer. I'm sure we have all had enough of it.
I don't think I have ever wanted a cigarette so badly right now.
So we have 5 inches of snow today. Just waiting for locusts, the plague,,,,,anything else?

Tomorrow- we leave for Mount Holly. We have a hotel room for 3 days to make base camp while the matriarch redefines breasts and gets this shit out of me once and for all.

Tomorrow- they detect sentinel lymph nodes.... Friday- all gone. everything. from the chest wall on out.
not to mention my spare tire- which I will never miss.

the song above is one that I have always loved- in fact probably once of the best albums ever produced.

The lyrics say it all. and now it has new meaning.
I'm gonna kick the Sunday outta cancer.


99 posts.

It's just hitting hard right now. an uncut flesh with a mind resistant to any conventional fixins.
I put my life into their hands. Literally.

here we go.
24 hours till the cancer shows its faces and gets the hell OUT.


I am anxious. Nervous.
Scared. Excited. Freaking Out. Freaking IN......


Azalea had a good question- if I get my armpits cleaned out of stuff- will I still have to wear deodorant?.
Kid's got a point.

what do I do with the last day of having breasts?
That is SO weird to say. all of this is SO weird.
I laugh to myself when I give myself the visual of finally coming out of surgery and looking down and I have these massive boobs. lol. I doubt it, but you never know how much fat is in your stomach. Doc says they might be bigger.
The 1 shot at a free boob job thanks to President Clinton and the 105th congress - he better make them bigger. And to the jackasses who voted no on that bill- shame on you.
And as well with my eternal 12 year old sense of humor and question (it keep you young)- I think of all those people who had out of body experiences during surgery.
While I don't really care to see myself being operated on, I think it would  be kinda cool to have my dad visit me, or be able to fly around the hospital.
As long as I come back=- I don't want the white light and tunnel yet.

So many thoughts going through my head- it's hard to file all of them.
And I worry about my Jersey Shore too.

Leaving work for the last time in 2012 was a little hard- we got slammed by Sandy- which shut down our work for a whole week- a week that I was supposed to train and help and get things stable so I could leave it- I kinda didn't have enough time- but I have faith in my boss and my embroidery lady. I also figured out how to work from home remotely on the work computer so hooray!


We leave the shore here for Mount Holly around 1. Blue injection happens at 3. go home to hotel and try to sleep. Nothing after midnight.
omg omg omg.
eeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeek.


Nancy- if I didn't have you and your words through this whole ordeal, I would have been lost. Seriously. Thank you.




here we go kids.
.....................................

xo
b

What election?

like this song? It was filmed in Normandy Beach near our home here- the town is now gone. Purchasing this song helps local Sandy relief for residents. You can pay what you want. ...(Thank you!)


Hooray. I am back. I missed you guys.

I hope y'all have been hanging in there being patient with my typos and absence this whole- polease know that typing has become more and more difficult as I type every other word either backwards or wrong, courtesy of chemo brain.

Ok- so Sandy.
Sandy came and went and destroyed a lot of our home here on the shore- not our address home- but our home home. our state home. It was a crazy night than landed us cut off from even our neighbors and the rest of the world- a night that had a wind that sounded like the most angry roaring tiger. I saw the beach the night before landfall in Bay Head- and I have to say- it felt so angry- the presence of an angry sea is really scary. The ocean rose up in the little time I was standing on the steps over the dunes. - but the time I left- it was up to the 3rd stair.
I knew this was not good. I actually ran down the stairs. away ...away
Our power went out the next day around 7pm. we sat through the storm watching the trees in the dark wind just fall down around you- lit only by the 4th of july fireworks all the transformers made as they came down.
Horrible scary.
Little did we know that just over the bridge- in the very same spot where the above picture was taken was swallowed by the ocean.
It disconnected a piece of the map right up that same right from the state. As we awoke the next morning- ti was like the cliche Dorothy when she opens the door and it turns to color in the wizard of oz. Only in reverse. What we saw was horrible, and we realized how lucky we really were.
without power or internet - we were unable to really see what this storm did until the power came back on and it was terrible.
the roads are damaged all over the place here- SO many families displaced and homes destroyed.
It makes you cry just to see where you grew up look like ground zero on 9-11.
After driving up to Asbury and back and seeing it all- it just leaves you with such a sinking feeling. You will never know what happened here until you see it for yourself.
Then I realized it.
Cancer is a hurricane. Just like it.
I sympathized with all those affected because I was going through the same thing. A shitty act of nature that just decided to take everything or just something special from you. Turn your life upside down.....cause discomfort. anxiety. the feeling of being lost and without a viable home.
Homes, like people- are just containers.
That's all.
Destroyed homes, homes to be fixed, homes that made it out ok.
 Like cancer- sometimes it touches you lightly, other times it will kill you and take everything you have.
Sucks, eh? So I feel like now more can relate to how I feel... I hope this doesn't sound selfish- but it was like a whole round of chemo hit the earth. And I knew just exactly what it feels like.
I felt like if I couldn't do much and only the very least and best I could do about myself- at least I could try to help others. I baked cupcakes for the National Guard :) and doing my best to get the word out that we are still very much an open wound of a zip code (08742) and help and hot meals are still needed by those providing. I am grateful to have the capacity to help and our friends delivering goods from out of state for us have been GREAT  have to stop though because the surgery is Friday, I have 1 more day of work left and I need to conserve resources.
I am just still so wanting to help.
Help is everywhere though- you can get free food at any church- help, shelter, warmth, - people are even bringing in food trucks in the midst of the disaster and serving food on the streets for free. Out of their pockets. Everyone is helping everyone else. It's beautiful.
I am overwhelmed by the charity and sadness of it at the same time.
My brother and sister are also coming up with a van full of stuff for the relief efforts Friday and I couldn't be happier to see them.

This storm has been ironically- a diversion- from the impending surgery I am doing my best to breathe through.
weird. It kicked my ass into doing stuff for others so much it really made me forget I had cancer for at least 2 days.
I uploaded my pictures to facebook since I love taking storm and New Jersey photos.....
hopefully it will shed light on the destruction that the news seems to forget. There are still people without power. Friends and family have lost entire homes, businesses. it is huge.
But our boardwalks are so damaged and next summer looks like a bust for doing anything with the kids there. and that's sad. we just love it there.
And Mark & I's first home was in Ortley Beach on 2nd ave a block away from the ocean. Now it's gone. A war zone, literally.
*sigh*

Homes, like bodies....are just....containers.

So much, so much to deal with.

But we're New Jersey and just like fighting cancer, we'll rebuild. I'll rebuild too.
My thinking, my heart. My health and my drive.
So much to come home to after surgery. I wish I could help my home heal more...
Just so much to digest.

and election day. I forgot about that=- but I did vote. and we still have not celebrated Halloween yet.

Friday is the big day. the big double M.

I will try to blog through the drugs from the hospital if I can- but this probably is my last post as a whole container.
We have come a long way so far. I love you and thank you.
see you on the flipside......
xo
b

tempest behold.....

Greetings from the Jersey Shore. Currently, we are under a very serious watch for an upcoming storm system named Sandy that is apparently projected to do some damage. I live about 3 miles from the mighty Atlantic in Point Pleasant- it's literally a right turn and then a left turn to get to the ocean from my house. There is a crazy still feeling outside tonight- soooooo quiet- not a leaf rustling anywhere. It's strangely warm and there's a fuzz to the atmosphere. The big one is coming, I think. Our home was built in the 1960s and very much strong and secure for any kind of coastal storm at least. But they're predicting that this one will be historic. My thoughts and love and protection vibes to all you guys out here on the coast with us and everywhere in the path!!!
We have a few trees that I am a little worried about, hopefully they will rock out as they have all this time.
I like a good storm and the best is being able to go out to see the ocean before and after.
Still- nature is to be respected and we will take all the necessary precautions.

Thank you all for the kind words on yesterday's post~ I had that letter in the making for a while-  just had to get farther away from the diagnosis and do the treatments and get out of that hole first.

There's a contrast and similarity at the same time from then until now. I'm almost 100 posts here, 8K+ hits- You all have followed the drugs, the haircut, the bad days, my dark side, my groovy side and the part of me that I discovered through these writings.
And that part of me's growth is documented as the tumors end their lives. Granted, it spread it's ugly word all around me forever more- but every year I go without any bad news will be a year lived fully. The MO from here on out.
Don't wait.
Dye your hair blue if you want.
Hug your kids every single freaking minute you can.
Hug your husband every single morning and night.
Tell your mom how awesome she is.
Give thanks for their love and make it a point to see all 5 siblings at least once a year.
Go west.
Pay no mind to that ghost that will forever haunt a house.
Finally FINALLY learn how to play that theremin.


Yup.

It's the core of what I have to be from November 10th on- a shift in the soul's tectonic plates. The innocent piece of solid island Pangea has fragmented.
Make the best of it.

There isn't anything that is keeping me from doing this- this is just affirmation.
I spent some time in some of the deepest chemical and mental trenches of my life ever ever. Places I don't ever want to see again.
Wherever this has led me to this point in life RIGHT NOW- it has spurned such a fire of fight in me for the truth- I hear of cannabis oils that eradicate some tumors. I hurt for the people who have to deal with this with no income to pay for living, or medical expenses- or lack the support of childcare, or a family to help them. I get pissed at profiteers from a disease. I want to see the cause of this found. And I want to see a revolution of uprising that will help get rid of this epidemic once and for all. I want to help all the people who can't do this on their own.
Oh golly I am furious, in a revolutionary way. I want to do so much, but I need to focus on healing right now first.
but still--- a revolution is needed. a hurricane of good.
......I am inspired.

love.

xo


b

an open letter to cancer. GFY

Dear cancer,

You are an asshole.
I met you for the first time when you decided to visit my mom in 1995 as Hodgkin's Disease. I was an angry 18 year old, pissed off at the world, and not too fond of my family situation at that point. I was pissed at you, but I never really got to see you firsthand because I wasn't around for my mom when she was sick. I admit it. I was a shitty daughter when the other 5 of us supported her. I was just confused and not in a place where I should have been. I didn't get to fully acknowledge the bullshit she went through.
You left for a while. 7 years go by.
Then you visited my dad...Multiple Myeloma of 2002.
At that point- I was a new mom, so you never let my daughter ever see her grandpa when you weren't in his life.
Azalea never got to go for a walk with her grandpa because he couldn't. She grew up with you taking up residency in her Grandpa's bones.
You sneered at all of us and my whole family how you were going to steal my dad and were never going to ever give him back. I fucking hate you for that.
You also took my husband's father quickly in 2004. In 3 months he went from a happy jovial man who loved his dogs, the cinema, and life, to a shell of a human curled up in a hospital bed, medicated heavily and going in and out of consciousness and day before he shuffled off this mortal coil.
But my dad fought you every day for 8 years.
 In 2009, I found myself pregnant and my first thought was "My dad isn't going to meet this kid, is he?"
You stole 2 grandfathers from another child who will never know them.
I watched firsthand how you covered my dad in tumors in his last days and took his life before my eyes, watching my dad's eyes roll towards the heavens as he succumbed to 8 years with you and left this plane and his children, his wife and his grandchildren. He didn't want to leave. He fought to stay. Because of you, he was scared. And nothing ever scared my dad.

You probably had started to shack up in my breast at this pointwhen he left- silently plotting and hanging new curtains as you decorated your new home with your evil and taking my lymph nodes as lawn ornaments.
You announced your arrival loud and clear when I felt you in the shower as you were out and watering your front lawn.
I faced you. I still face you. I looked you in the eye and gave you the finger the minute I heard you had moved in. I won't ever EVER let you get me like you got my dad or my father-in-law, I got news for you.
 All these doctors and I are going to KILL YOU once and for all. How's that sound?
You, like any other bullshit that has walked into my life, have made me see strength, resolve, the kindness of others, what amazing friends and family I have. I am grateful for the experience- but i am done with you and you need to leave. And if you don't, prepare to die. I embraced you for a while, as I should any life experience- but I'm done now. YOU are done.
You fucked with too many people I love.You killed my father, you messed with my mom- you took my husband's dad, you stole my friend Andrea- you messed with to many of my friends and family, bro.
If you were a person, I would have killed you 100 times already. The worst kind of death I could imagine at the fate of my own hands is what i would do to you.
What makes you come around?
What did we do to call you?
Whatever it was, I hope someone figures out the bat signal that makes you show up, so they can put out the light. unplug that mofo and dump it in the ocean. or grind you up into a million little pieces so noone can put you back together ever again.
and you are taking my breasts with you. One I don't even have to give up but I am anyway so you won't have another home to come back to if you do.
You are such an asshole.
You even screw with little kids.
You are pretty much in line with Jerry Sandusky. only bigger. and way more of a jerk.

You are loved by my nemesis the pharmaceutical companies, and kept alive by those not wanting real cures and actual remedies to be made public and legal.
This relationship you and I have had- as dysfunctional and codependent as it is, is over. This is your 2 week notice to leave and never come back, and don't even think about bothering me or my friends again.
You made me pissed, more aware, charging for a cause, angry at Komen for you and her sister making money off us, educated, and way more alert to anything ever before April 2012.
It's excellent how you showed me all this, and I wish it wasn't you living in my breast and armpit to make me see it- so thank you- now move on.

I think you suck.

So be on your merry way- go take a long walk off a short pier and never come back.
Make like a tree and get outta here.
and go fuck yourself.

:D

...xo....