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.