I think this blog is a great book so far. One with an unexpected twist.
Today marks the end.
very few blog post here were made when I wasn't in treatment.... the first ones were totally naive. I'm a little embarrassed about it- but who knew?
Now I am wiser.
been through the rounds. Fresh out of the stalls.
I still have my pains, my burns- freshness. Wisdom will grow and calcify.
I just cry when it hits me that after 9 months, I'm done. In the time some people create humans, I saved one.
My doctors did it too- but I have known since May 10th- when I saw that photo of Mickey Mantle on the wall - that my dad was gonna be with me and that everything was gonna be ok.
Ok.
I believe and I feel that even in my personal experience- that we walk with our guides. We all have help- even the most evil of us. It's our choice to listen.
But we have guides. They are there. I don't care if you are flaming atheists...they are fucking THERE!!!!
I embraced mine as best as I could- I embraced the formless prayers, the fortune I had to be surrounded by such awesomness of people and spirit- and I felt it- I always felt it- and I will always feel it - in my heart and forever.
This is just the beginning.
keep off the grass, cancer.
Tomorrow is my last treatment. This song has been in my head all day. ... Not technically free from treatments just yet- but definitely free from bullshit.
As I sit here on this eve of my last treatment- I have a nasty oozing burn, a giant square of pain. A sense of completeness- at the end of my rope- exhaustion, really tired of it all....so happy to put the last 9 months finally behind me. And 5 years. I took a day off from law, checking to see if osha sent me the official report yet, and medical questions to just lie down. I am spent. I had the wind knocked out of me through all these damn treatments... I am at a point where I'm just done. I have no physical energy left. I can't pick up my kid, let alone stand still without the flaming evil of radiation reminding me that it's there. TOMORROW IT ENDS. all of it. I'm missing my co-workers today since I really enjoyed working with them and they were a real support system for me when I first got sick. I'll probably never see them again. I still am dumbfounded how someone just couldn't own the fact they poison their employees. Selfishness. My life now is focused on my kids first. My husband. Our life as a family. Then my art. Then everything else. We have been through enough where I think we should just go back to what matters most. once and for all.
It makes me angrier every day that I feel more like shit because of this treatment- and I didn't have to go through this. I wasn't supposed to be exposed to all those chemicals- I was supposed to be respected enough to be looked after at my workplace.
I feel dumb in a way for staying so long. But how would I have known? They didn't follow any sort of any safety rule at all. Like providing employees with the big book of company chemical ingredients.
Had I known about the benzene alone that was being sprayed all over- I wouldn't have worked there. No way.
So I sit here, on my official second day of being unemployed and uninsured--- a boss who got so upset I called him out on safety (because who the fuck needs a safe workplace?)- and was irritated as it was with the length of my disability- I just want to hit him.
Hard. I can't even do that with my arm. He knows we're broke. I cannot afford the COBRA payments- so thankfully my radiation is over and it's mostly followups from here on out. NJ will give me insurance if I can go 6 months without. Which is scary- but what choice do I have? I already found out my insurance isn't covering my radiation anyway so just add it to the giant pile of medical bills. 23,000 dollars for half a run of rads. YO. who can afford that?? The blue collar jerk who has to slave in a warehouse full of chemicals for 16.50 an hour whose priorities are feeding her kids and paying rent? It's close to a quarter of a million dollars to treat cancer. My hospitals do have charity care thankfully so we can work out a deal- it'll all take care of itself. I trust the Universe. It's scary right now though. It's like one of those dreams where you are driving down a hill like the kind in San Francisco and the brakes fail. eek. I trust I'll be ok. I hope my doctors can be patient with me. hah hah. get it? I am filing for social security disability since my right arm is shit right now and any sort of work I did before will not be ideal for the future. And it was all manual labor. and Desk work, but it was artwork and my wrist nerves suck at artwork right now. getting it better though. But it'll never be the same.
For my boss- it was just about money. I hate money.
I hate to think of the other employees of other businesses like this one out there- and there are many... Some even do it in their house with their kids sleeping upstairs. Ventilation is so key. Good grief the whole ignorance of the industry to these chemicals is astounding. or maybe my boss was one of the rare ones who didn't care. I hope not many else are like that.
It makes me sick to think of all those years I breathed all that in....how many other women are out there like me? Drycleaners? We used the same chemical they did.
One of the radiation techs...her aunt worked as a dry cleaner and died of breast cancer.
wtf?
I never got my clothes drycleaned. I never took birth control pills. I wasn't around ionic radiation. I didn't have vodka for breakfast. I ate organic food (no pesticides). I even smoked organic cigarettes. I even quit smoking when I got pregnant! I hula hooped, I danced a lot, breastfed my kids, I loved music and the outside....... I stayed so freaking healthy for what?
To go and be around the equivalent of smoking 8 packs of cigarettes every day at work.
But nope- that didn't give me cancer. No way.
Shit needs to change. SHIT NEEDS TO CHANGE!!
My pain makes me angry. This radiation is painful.
and I was supposed to work through this? My armpit feels like it's being scraped out with a flaming hot rusty jagged spoon. I move it a little, and the delicate skin rips and it starts to ooze. it's really gross. The nurses and Dr. D the radiation oncologist said it looked nasty and gave me an Rx for Silvadene. I looked up the ingredients and it's got methyl paraben in it. An endocrine disruptor. LOL no thanks. Good thing I'm an amateur chemist these days. Polymers and covalent bonds are coming out my ears. I have done so much research of the chemically induced carboxyhemoglobin levels and hepatic activities, I could be an endocrinologist. I know my shit.
My saffron seed is working well. But it still hurts. I feel like I got that costco rotisserie chicken again inside my armpit. Like a big armpit oven with flames like in those old burger king commercials.
Owie.
radiation burns
I had it photographed for posterities sake. During the phoographing, I actually covered my 'breasts'. lol. what for- they aren't really breasts really, and I have no nipples so what am I covering? The instinct is funny. I wonder if I could technically go topless, although it woudl be walking horror movie between the stuffed flesh and fresh scarring. On the other hand- I have a rather large scar across my stomach, which I have no problem displaying in a 2 piece over the summer. I think the scar is badass. a LIFE tattoo. I don't think I am going to cover it up. It makes a smiley face too. Who knows. Maybe I will get it inked over. Not sure yet.
My oncologist also told me that I would have chest pain of some kind of the rest of my life. Yay. If it comes and goes, it's normal. Any pain that stays and is constant for 24 hours a day, 7 days a week could be cancer coming back and that's when I need to call. It's a jarring reality. I had a very aggressive tumor.
Who cares, though- I won't be around that stupid building anymore. It was worth my job and insurance to be rid of that place.
So my cancer won't come back since I won't be around that garbage any more.... That's MY affirmation.
Almost done. It hurts. So glad to be unemployed. It feels good not having the pressure of needing to perform when you feel your shittiest. I was supposed to go back to work yesterday. No way I would have been able to go and lift shit, sit at a desk, push, pull, put pressure on---- I'm glad I am gone. I am going to enjoy this time with my kids, my husband who also works at home- and life. and Breathing and healing like I should be. It's my time now. I need to breathe through this next legal struggle of fighting for safe workplaces..... but for now we concentrate on the armpit. The ol' Shitshow has now become the Rotisserie. Scar tissue and broken nerves cooked fresh daily. At least I'm seasoned with saffron.
whoa.
And today hit me like a tons of bricks emotion wise and energy.
I seriously need a vacation. or just to leave for a while.
I can't say if it's the general cancer, the stress of treatment, the unsupportiveness of family, the treatment itself or just the stars. I am kaput.
Between fights with my mom, this lawsuit's work, the work to scramble to make some cash for the last minute leap of faith I took, just everything- it hit me.
I could tell it all building up when I started to argue with my mom and dumb shit made me so angry I just snapped. I also have not slept or eaten regularly for weeks. So that could be it- or the hormones, or the fact that i just need to buck up and not react to my mothers hurt.
It is so hard- and I doubt she even knows what she is saying- but oof. We just don't get along. I'm mean, she's mean- both of us are just mean to each other- and I hate that.
I can feel stress physically inside me. It bubbles and rises in my ears. I can hear my heartbeat.
While "eliminating stress" can be easy for some- it ain't so easy with 2 children and a mom who just doesn't care. Eliminating stress means going away from cancer. getting fuck out of the house for a change. for a week. I have to be a mom, wife, daughter, cancer survivor, radiated patient, uninsured and unemployed. it's hard sometimes. It's tough as shit fighting for everything the whole way up. It's also something I try not to complain about- but fuck it's hard sometimes.
*ergh*
I have to watch my reactions and not flip out anymore. It should be easy since my mom and I probably won't be speaking for a while.
as for work-
The fact that I got pissed on because I called OSHA actually makes me feel good. It's actually doing that Eat Pray Love thing- only I am not Julia Roberts and I called out my boss instead of calling out myself. Unless I just did above. Anyway--- I am going to do what i need to do for my family- and kick ass at it.
making stuff and pushing through a horribly wrecked arm is what I have to do. I am not satisfied with it's limitations but I do have to respect them. But it ain't gonna define me.
So that's what I have to do. Slowly. but surely.
No news yet on OSHA, or a call back from the lawyer.
Oncologist says he couldn't pinpoint the cancer to a certain toxin, but said toxins could cause cancer- so it's a wash- I didn't expect him to go "Oh you are so right" - but he was open to listening and took all the info on the chemicals with OSHA rules. And apparently studies don't count because they cause cancer. In rats. Not people.
ugh. But plenty of people in the printing industry get major incidences of cancer from solvents. used without protection or ventilation - with giant cancer labels on it- but no--- that didn't cause your cancer... I question some peoples' ability to question. Not asking why is dangerous I think.
Doesn't matter. I'm still going to push this issue.
--- Just another Monday.
Another week of radiation- the last of the 5 days in a row radiations. After next tuesday- no more treatments.
No more.
I'm not used to this "no treatments". What is this magical realm?
It's a realm where you are out and about- living the dream as someone who beat the beast.
Granted I probably still have 2 more surgeries at least to fix these weird looking mounds of flesh on my chest, but as far as treating it all- it'll be...done finally.
And I can recover unemployed with a little tiny cushion of comfort to relax and recover a little bit. I needed it. I needed so bad to get back to my bliss. Money is such a heavy chain.
When you are providing for 2 kids- it gets heavier.
Feeling like shit that you can't just up and Eat Pray Love like that lady did and go ride bikes in India and all over up in the ashrams.What kind of freaky artist am I? No more.
I took a major risk standing up- and I was scared. I was more scared of that than hauling my butt into a chemo chair.
I held that fear inside me that wouldn't allow myself to be happy for the sake of someone else. Really.
As much as I told myself I loved that job, I did. I really did- but I longed very much for that old freedom back to vend festivals and just pick up and go whenever we wanted. even with a child.
Well I sure got my wish, didn't I? I blogged up and down in the past about not being afraid- being afraid.... when I was lying to myself. I knew it too. It killed me to admit that what I was working with was horrible for me and I wasn't going to take it anymore. Bye bye nice paycheck. Bye bye paid benefits. The worth they are being gone right now is worth more than any money or all the treasures of the world combined. I conquered natural childbirth twice, had my netheregions cut and sewn back and torn. I conquered cancer, giving my breasts and armpit contents to science and in the name of saving my life. I stood up to a puppetmaster and cut those fucking strings. Well he actually cut them for me, but I cut them with a letter to OSHA. (Who by the way is still inspecting). Nothing can hurt me anymore. I got a family stronger than steel- and that's ALL I need. That's all anyone needs. The Beatles were fucking RIGHT!
Sucks it had to happen this way- but I feel so strong inside for what i stood for. And money is not a heavy chain. It's just freaking paper.
My boss delightfully sent me the continuation of coverage form- so I could kiss his ass and keep my health insurance because he knows I need it. ugh.
Lost my dental though. I can't squeeze all that work in either since you can't see the dentist during radiation. shit.
But who cares. My missing tooth will stay missing for now.
what's teeth and money anyway, right? lol
This sense of peace is over me now I haven't felt in a long time. The stress of not having to worry about my health going into a toxic building anymore.... the prospect of living out my life on my own terms- for my kids like it should be.
Granted, my physical abilities won't allow me to do most of the things I would love- but I can work at things to get them better. and stronger.
My head is sure screwed on straight.
Chemo side effects are still in full force- Neuropathy. Bone pain. ugh. Nausea too.
The radiation burns are there- but doing great because of the saffron seed I was sent. Good stuff! The techs really like the way my skin looks. I've been using it since Friday - although the skin is a little raw- it's alleviating a lot of the burn. and itching.
I know I'm speaking to a very small audience here, but it's ok. It's kind of weird having to go underground this way- but it has to be done and nobody reading this blog isn't trusted.
Side effects have reared their ugly head where the burns have finally come to the skin's surface- red patchy scaly - but I'm keeping it at bay with a mess of goos and creams and nice smelling things. We're doing ok. The lymphedema is actually getting a lot better too.
Been real tired- I'm at the point of it just being enough already- I was talking to Mark the other night - this man has been my rock and passenger through this nutso ride. God bless that man.
I explained to him that I don't think there can be anything else they can do to me. I've been poisoned, cut open and burned.
For cancer.
This is how we treat things we don't understand-
All this research and money and pink ribbons- for what? This cancer accounts for a third of all cancer cases.
And nobody knows why we all get breast cancer. Not after all the billions of dollars spent and pink Kitchenaids sold. After all these years?
Duh. All that money raised and we still don't know is bullshit.
I have done more reading and research on breast cancer being caused by environment and the lack of accurate studies out there is APPALLING.
Yes- it's great to get the drugs that help. Lots of big breakthroughs there. But finding out WHY seems to be low on the priority lists of people.
Because the answer to the "Why" usually involves the drug companies, or the pesticides the drug companies make, or the plastics we use everywhere- all of those are commodities. The endocrine disrupting chemicals I believe caused my cancer were rampant at my workplace- being vaporized all day long with no ventilation. If these things are terrible- why are they being used so carelessly?
And I hate seeing the same chemicals I was around that cleaned screens and ink also being listed as food ingredients. Shit is crazy.
I can be that person that says "everything causes cancer" - because - it does. But in high volumes at careless levels - this goes on everywhere in every industry.
It seems the only way to escape all of it is homestead and make all your own food and clothing.
Which duh- is unrealistic.
I started making my own laundry soap, my own breakfast cereal, pasta, breads, salads. Stuff we can do ourselves, we do. My veggie garden should be starting up again soon too- with a better outcome. Chickens I'm sure will be down the line at some point.
Point is- I have read more literature about the epidemiology of breast cancer cells that I ever cared to in the last few weeks. Specifically how chemcials and hormones affect our delicate balances- and chemicals violently tip those scales. Violently.
Women who grew up near farms and agriculture have the highest incidence of breast cancer, but our non-organic food is safe?
The women working in the places that can food- (chemicals line cans) - high incidences of breast cancer. But canned food is everywhere.
Women working with plastics. High incidences of breast cancer. Plastics are everywhere.
I feel like I was the lab rat that showed that high levels of crap could affect you. My hormones raged out so bad after I started working there- I never knew the connection. Painful periods. Heavy bleeding.
I spoke with a lawyer and I have to sit down with my oncologist and Phyllis and hash this all out and let them know the entire scope of what i was around. Its hard to explain to someone on the outside how bad it really was. But I think with the 300+ pages of clear evidence of endocrine disruptors being inhaled all day long caused breast cancer, they would agree. So I am pleading my case to them. I have confidence in their intelligence to comprehend what I am trying to prove. I need them to substantiate my findings to proceed.
I also found a website last night of different printers talking in a message board forum- I saw a thread titled "Show us your shop"- or something to that effect.
All the photos - and I man ALL- showed spotless shops you could have eaten off the floors.
Nothing like what i worked in at ALL. and ventilation all over the place.
One guy worked in a shop like mine- posted photos (but even THEY had ventilation) - and he got accosted for the mess. I was not supposed to be around all that solvent soaked lint either. It was everywhere.
I was in a bad place. And Methylene Chloride is serious business. A simple google search for "Methylene Chloride and Breast Cancer" has some surprising results. But I was labeled paranoid for being concerned.
And not one person who was a professional ever said anything about the ventilation (or severe lack therof) - to us at least.
OSHA inspection is still going on last I checked and it was going on 7 days. They will come back with an abhorrant report.
Get mad at me, coworkers. Boss. I have every right to do what I did because I got CANCER. I ruined your business, boo-hoo. You ruined my life with your carelessness. Not sure how anyone could stand behind or support my boss now with his decision.
I just wish --- wish I would have known all of this before I lost my breasts and right arm for a buck.
I am not one to sit back quietly. When this comes to light- shit is going to CHANGE- for the chemicals women have to be around- my old industry- and bosses like mine who put their workers in harms way won't be allowed to do so anymore. and you will hear me from the rooftops. I'll be more annoying that Snooki.
Hear me roar.
Mama Bear is ready to go.
Don't mess with a DeLorme.
more added::: 4:40 PM. I was painting today- like real painting! watercolors, pens..... after about 3 hours of drawing- this arm starts to swell up again. and it hurrrrt. My art is messed with.... I cannot even draw a simple line without the nerves acting up. You mess with my art- you really mess with me, now. shit is war.
Even days are Bolus Days- when they put that wet thing on top of your radiation area. Today was number 18 of 28. A Bolus day.
Some new developments since the weekend... After I informed my boss that I would need more time since I am still in treatment and recovering from a nasty arm - as well as expressing concern over workplace chemicals, I was informed by the company that my position is no longer being held for me. And my insurance gets canceled along with my employment termination as of Januray 31, 2013.
So I was fired for needing more time off, and it's really convenient it happens as OSHA starts their inspection. What is the matter,boss? Worried they might find something?
A prompt call to the lawyer waiting for the OSHA report - he calls me back and instantly puts me on trial. I am not one who takes well to being yelled at - but I liked the guy's attitude. Someone who bites someone's head off is what I need because I just can't do this by myself.
I meet with him Thursday.
I'm not a fan of being told to sit down and shut up.
I just beat cancer, no lawyer is going to put fear into me....as will no boss.
I'm smart, and was that lady who read all the ingredients. Good thing I was paying attention. And I was the nerd mom for caring. Win for the nerds!
Body wise I am tired. Tired overall from radiation but now the burns start to settle in- I can feel them coming closer. My skin is purply red and angry looking between the burn and the holes where the drains were. Ugh. My determination in this pending matter will not fade. It is a travesty that women have to work in these conditions, being bullied by bosses, and corporations when they get sick.
So you fire the woman in treatment for cancer, during disability. Canceling insurance. Real cool.
Weekends are "days off", but I figured I'd blog because again- I spoke too soon.
I said I couldn't sleep. HA.
Today the radiation train hit me like a ton of giant 1 ton bricks- I woke up and just had to go back to bed. Here it is 4pm and I just can't do much besides sit up for a few minutes - then I lose all steam and have to lie down again.
This is like the first rounds of AC- Just soooooooo tired.
And my boss incidentally wanted me to work through this. Is he crazy?
Sorry- this one couldn't work through it- this is just another wringer the body goes through. Serious shit too. The more I think about him being so ready for me to waltz back in after 12 weeks, the angrier I get.
I look 10 years older when i look in the mirror- but I'm trying to justify that with recent lack of sleep. My eyebrows that I happily tweezed once they grew in in their bushy glory aren't growing back, and my hair's slowed down a bit. I'm a half inch away from having Ryan Seacrest's hair stylist.
Today I just couldn't deal with the kids in the house, I was so exhausted I had to ask my mom to take them. I haven't had to do that for a while. Melody is just in a phase where she is a terrible two with screaming and disobeying and I try to keep it together and discipline, but I can't today. I just can't. I give up for 24 hours because it's too much energy and I'm not 100% here. It's the frustrating part of being a mom with cancer. You can't give yourself fully to your kids. It's sad sometimes. But I keep going the best I do.
I am so calmed by the fact that I don't have to go back to work- it was a place I wish i didn't have to go to for a long time- I prayed to win the lotto so I could go back to being that stay at home mom again. Nowadays, money is just paper, and my kids mean more to me than any stupid job that puts their employees in harm's way directly. And I feel calmed that this blog isn't public anymore and I can say what I feel. Not having that stress in my life is going to be so good for me...
If anyone wishes to come over here, I just need an email address to invite you.... xo
b
Been busy-This blog has been made private because of some serious revelations and truth that needs to be brought to light- not just for my cancer- but for other women like me as well.
Something in the stars decided to finally grant me all the side effects I never received in full force during chemo. Neuropathy, bone pain, headaches..... and the lymphedema is creeping up slowly too.
Doing my best to stay ahead of it.
I was never a nap person- you know I'm tired if I'm napping during the day.
I wasn't really able to nap too too much during this crazy train- I did though.... but now- it's all the time naptime. Only I can't sleep.
Whatever radiation is doing to the scar tissue in my arm, and chest - it ain't pretty- it's just ucky. and uncomfortable.
Unexplained sharp stabs come out of nowhere, at random moments. It's my nerves knitting back together.
And the issue at hand.....work. ....
I cannot go back to any work because I was exposed to chemicals.
There- I admitted it.
I sat in a virtual fishbowl of solvent fumes, plastic fumes, horrible chemicals being sprayed around me with no regard and no ventilation.
I realized something wasn't right when I watched Pink Ribbons Inc., a documentary about the pinkwashing of society and how breast cancer is marketed and portrayed in its pretty pinkness. During the course of the documentary, the tie between plastics and breast cancer were cited, in a Canadian worksite where plastics were melted and workers were breathing them in- it actived their estrogen levels to crazy amounts, causing estrogen positive breast cancers. It struck me- that I too- with estrogen positive breast cancer, had been surrounded by fumes of estrogenic chemicals designed to disrupt the endocrine system, with no ventilation at work for 5 years, 40 hours a week. Most print shops have adequate ventilation. And safety protcols with the chemicals they work with (which is a bevy of carcinogens, enough to make your head spin).
Not mine.
Nobody cared, and the crap just went on. The industry doesn't care either. The toxic process of making a tshirt from fabric to printing is HORRIBLE for the environment. and it's an industry where standards are lowered.
Ventilation is standard.
not having it is borderline criminal.
And even more evil when a pregnant woman works in the said place and no care is taken either.
The things we do for money. A 4 dollar an hour raise and paid medical benefits after your first 8 months , with a wholesale connection ot getting your art printed is a hard thing to walk away from. But if I had known the full spectrum of what I was exposed to and what I deserved as a basic human right of safety in the workplace, I would have left much earlier. Maybe.
It was so nice to have steady paychecks once again, I had the great boss who took care of his employees- Yet now that I step back and take a look- I see he didn't care. He didn't take the time to look up what might be a healthier thing to do for his workers, currently using an open door as ventilation. Sometimes.
Something isn't right. I have been told by my doctor that I shouldn't go back into that building- and how could I?
How could I work for someone who made their surrogate mother sign a contract to not be exposed to high chemical contents as they carried their baby, and didn't give a shit about his own pregnant employee?
Done.
I went through this for t-shirts. Other people go through this for tshirts. Not just breast cancer either.
As of this blog post - OSHA is following up on the official complaint, and I call my lawyer back when the reports come back.
This is a scary thing,but I hope this can help my industry move into a place where it isn't so blatantly hypocritical.
I am exhausted through this- but I refuse to let anyone get hurt anymore and I'm making sure safety gets put in place for any other people working in shops without adequate ventilations like they are required to have.
....
16 more to go! Today kicks off radiations 12-16. And we just keep getting hotter. The burning inside feeling I'm getting used to. The arm isn't behaving either- (Nancy I am doing the wrist to armpit thing and exercises! lol)- it gets a little better with the stretching and massage, but it's still shot. And it's visibly puffy. boo. no puffy arms. Call me Puff Mommy.
Just another day in paradise with my personal summers keeping me warm in this wintry weather. Chugging along and doing what I do best. Living forward. I might be in pain, miserably uncomfortable at times, and frustrated with every day limitations, but I'm happy. I'm still here. I am grateful for every morning. Every rotten day, every ray of sunshine. I am still here. That's the most important part. and love. Can't forget the love....
Greetings and good morning~*
The hits on this blog doubled overnight in the last 3 days- wth?
Nice to have all of you here.... Thanks for being patient--- as you can see from my waning frequency- once again another treatment is kickin' my ass.
Had my first 5 days straight of rads, and it was interesting to see the wonder and glory of a 5 day run.
I'm a little worried about the arm that seems to have gotten a little funkier lately.... I was doing good, but I'm suspecting radiation to the armpit + scar tissue probably isn't the most exciting party right now. It hurts.
And I'm starting to be worried a little bit because even the smallest tasks are starting to be a bit difficult, all due to the arm and impending doom of the L word. Lymphedema.
Since I am without any lymph nodes in that right arm, there is a tendency of it to get extremely swollen and painful due to the inability for lymphatic fluid to drain properly throughout the arm. So it collects in the bum spot- causes a whole mess of pain- and then I am forced to wear these sleeves and gloves that compress the arm. Your arm swells up like a giant sausage. It could come on immediately or even years later- no one knows. So I live in the shadow of this right arm- a goodbye present from Armpit Shitshow's City Council.
It is constantly an achy arm, either dull or sharp, and it feels like I literally have tight cords inside my armpit that don't stretch all the way in place of tendons. Too much pushing and it starts to swell up.
Washing dishes, folding laundry, carrying my child- all this aggravates my arm. Typing even aggravates it. It is really frustrating and downright scary. Again- I am so glad I did not choose to play music with my hands as a profession. I do use my hands to draw and paint though and that's been difficult lately from the nerve damage that occurred. I have lost something so precious to my life at this point in time and I can only pray that i get it back. I am on the edge of possibly ruining my arm every day. I don't know the limit. But it's been pushed lately and it is royally annoying. and painful.
My right arm. My baby right arm, my lifelong best friend to carry out my vision- fucking broken.
better days of living and art before cancer....my right arm in its glory days.
I'm really pissed that this shit had to happen on my good side. My art side.
Not even being able to make art now or possibly never again without problem is a very real possibility.
I suppose I should start to find a new way to adapt to my arm's limitations, maybe I should move on to the subject matter of one color canvases, start wearing blue sunglasses and berets in the evening, and name my works with nouns and numbers like "Train Station Number 2".
Pedantic drawings of females and fish and waves and swirlies are a thing of the past! I'm going YOKO.
Not really. But it was a great thought.
All I know is I am left with limited movement, and on the edge of a nasty painful condition if I push it too much.
Just missing my art a whole lot today. Going to see if I can find a new groove slowly...one that won't possibly cause permanent damage down the line.
I could punch a wall right now but even that would hurt it bad.
All that being said- this isn't bringing me down at all- it is just one of the many pains in the ass cancer causes. There's a new landscape to my health every week- Just trying to keep it pointed in a positive direction. Radiation makes you sooooooooooooooo tired. Tired to where you just hit a wall at 1pm. or at 5.
The side effects of the radiation are battling the side effects of Tamoxifen. Insomnia is being crushed by intense fatigue and I am actually sleeping. Third night in a row and I am dreaming again!
I like that. That's the best part about radiation. The being tired all the time. I welcome it.
The feeling like you are one of those rotisserie chickens at Costco is also a radiation side effect from you literally being microwaved and cooked in the so many words from the inside out. It is the strangest feeling of being burned inside, but most of you inside is completely numb from surgery- so maybe it's a good thing I can't feel all of this radiation. It sucks though. I can describe it as the feeling like your armpit being stuck down with velcro made of flesh- the feeling when you pull it apart is just what it feels like inside. The radiation is even going through my back- my chicken wing is all burny inside too. If that makes any sense?
So I am sleeping and dreaming and praying my arm comes back to 100%..... this is a very long and crazy road of healing that's going to be forever.
breast cancer is the gift that keeps on giving. ugh.
Today is a gorgeous day of almost 60 degrees, I'm going to take a drive with Mark and the kids to Mantoloking to see the houses and how they are doing building the island back together....
Enjoy every minute~
More 9 weirdness::: Today is the 9th day of the year, January 9th, and my 9th radiation was today at 9am. Par for the course. of course!
I am starting feel the burn get a little more uncomfortable. It's like getting a sunburn from the inside out. It feels like it's lurking and slowly moving to the surface. I'm scared of it's arrival. So I lotion and sit and wait. My fatigue is kicking up a few notches too. Which I am totally grateful for. Tamoxifen's insmonia is hell. It is a welcome feeling to actually want to sleep.
And dream! I finally had a dream last night. My hair all fell out and so did my eyebrows. I looked in the mirror and got very upset that I had worked so hard, yet I felt I was still at square one. A few minutes later and my hair had grown back. And I've been watching Parenthood too and catching up on the storyline. One of the characters discovers a lump and she is diagnosed with breast cancer. Chemo, hair loss, the whole nine. I haven't gotten too far into it yet so don't tell me what happens. What a portrayal. I applaud them because this shows what it really is like and not the sweet pink ribbon stuff you see every place else. It's real. and raw and whoever the actress is - she's great. The eternal fear on her face is some acting technique. Unlike this show- it is very rare to see an actual actor's depiction on TV of breast cancer that's so real. It's so real. Right down to the kale smoothies. lol. Check it out if you care to take a look at a bigger picture. It really does justice to what it does to a whole family, too. I see so many alike parallels in that show compared to me and others--- and I just have to give a hand to the show.
Still feeling crappy here and there- slooowly getting better every day. The night sweats seem to be getting worse actually. Last night I changed my teeshirt 3 times because it was so soaked. And sweaty skin + radiation burns really suck. Especially when you can;/t sleep and your sheets are all grody and bleh. BLEH. I am also not allowed to wear deodorant for radiation so I sweat all nasty after my shower and those poor techs have to be near my stanky menopausal sweating armpits. Poor ladies. They said they have smelled worse though- so yay! I'm not "that bad!"
I also finally got to talk to the oncologist about my ER visit- they just want me to keep an eye on things, and stay vigilant. But nothing was found and they think it was probably an isolated incident, but I shouldn't relax until treatment is over. Rads are starting to kick my butt. I even lost 5 lbs from the constant nausea of the Tamoxifen. This shit is for the birds. I feel like I've just about had enough of everything physically. Cancer treatment is a decathalon for the body. All the events and stages. Goodness.
Overall though, I feel a good sense of power coming back over me- Something that wasn't there before and this is something that will rise up bigger than I ever was..... feels great. I wonder just what this power will bring me. Oh I wonder.......
Not really much to elaborate on, but life throws us some crazy curve balls. The Giant Wave O' Stress is at hurricane levels. Personal stuff. It sucks when it's personal stuff.
I don't think I will ever get anyone to see what it's like to live through this, if they haven't already. Never ever.
Go away Hurricane Stress. GO AWAY.
Today was radiation #7- first of the week - I am shuttled between doctors and social workers and nurses today- trying to get answers and get this over with.
No real progress finding out what happened last Thursday yet.
Really not much to report on as for radiation other than the burns get a little worse each day as with the fatigue- SE's from Tamoxifen aren't letting up either. I'm soaking the bed and pillows every night. I wonder if it's dehydrating me. My body is at it's wits end.
I'll make the observation that people's true colors show when stress hits and crises happen. And when cancer pays a visit. Instead of staring it down, we react and really tend to isolate others in our reaction. I have seen sides of some people that I just don't ever care to deal with anymore and I am perfectly fine with it.
Life is too short to be kissing any ass.
There.
I'm growing fists and feet that stand tall and are taking root. I refuse to back down on anything anymore and I have made the conscious decision- along with being involved in every moment- to do what's right for me and my family. And the definition of family are the ones that practice kindness, basic respect, and unconditional love and general courtesy to everyone in their circles despite issues. Not just blood ties, folks.
I have a wonderful family and I am thankful every single day for them.
I am going to say NO more often.
I am going to live my life for me. and my kids. and my husband. That's all.
No more doormat.
It's amazing how much we lie down in life and don't even realize it........
Happy Saturday-
I neglected yesterday's post for the sheer point of forced relaxation- I felt like I got my ass kicked.
Had a normal radiation session at 9 as usual - I let the techs know about my ER visit and they kind of looked shocked. They told me I did the right thing. My mom drove me so I wouldn't be by myself.
I was just loving the new independence of driving by myself, when this crap happened. Now I am a little worried to go out alone. Currently I don't have a cell phone so I think I should get one now.
I had a nice day in with Melody. It is FREEZING outside, I would love to go for a walk though. I'm just reallllly tired. I can feel the burns starting to set in. It's like internal sunburn feeling right now. It stings a little inside too.
I called Dr. Cairoli at Virtua and left a message with the nurses to call me about the days previous event--- they called back- I didn't hear the phone ring. Phone Tag back and forth frustratingly to where I finally got to speak to a nurse and Dr. Cairoli was out until Monday. But Phyllis was in. So I explained to her the whole story and she was really helpful with talking about it. She didn't like at all the fact that it was so all of a sudden and not a gradual thing, and also suspected it may be a severed nerve ending somewhere. But no one knows. The hospital in Mount Holly was able to get all the films from Toms River and reports and stuff as of yesterday at closing, so Dr. Cairoli and Phyllis will have a nice project to look at Monday.
Until then, I was told to keep Tums on hand in case it happened again- it could be digestive as well.... ???? My esophagus is also in the radiation field as well, says the nurse. She also told me if I thought I was tired now, to wait until I get further into radiation....and that it's not a walk in the park.
But the nurse said to me that I should step back and realize what my body has been through- chemo, then surgery and then radiation - my body keeps trying to heal and then something else happens to it. If my body reacts - it's for a good reason. There's lots of factors here. It's just crazy. Not to mention that I'm stressed out a lot. I'm trying not to be, and meditating and breathing and typing here helps immesnely. Anxiety is a side effect of Tamoxifen too. Anxiety in someone who just learned to not be so anxious. One step forward, two steps back! hah hah!
If I breathe deep, I can feel a little achiness inside my lung. It's definitely my lungs. My lungs do not like me very much- between all the pneumonias, weird ER visits for breathing problems, weeks of bronchitis in my 20s, my lungs have put me through hell. I don't blame them after the fact I put cigarette smoke in them for 21 years. But that is neither here, not there. Good thing I live in the part of Jersey that's overhwelmed by ocean air and not factory air at least.
I can feel it though. It's there in my lung.
We had a nice dinner at mom's house last night and she kept the kids for the night.
Mark and I had a really nice night watching a movie and laughing and
hanging out sans a crying kid. It was a little selfish moment. lol. Originally I had wanted to go up and see a show, but there was no way I was leaving the house feeling like I was. No way. It started again though as ther night went on...... I got a real mild stabbing pain as I was lying in bed and I stayed still, meditated, and wound up falling asleep surprisingly. My body was exhausted.
So it never got back, but I felt the initial feeling again last night.
I'm just tired. Tired of living like this in pain or with side effects these days- it's like- ENOUGH. I would love to complete one simple task without feeling sick or not able to move 100%. I do it anyway, but this crap is getting old. I need to get a pair of sneakers and get the hell out and walking and see if it makes it go away.
The Tamoxifen I need to discuss with Phyllis on Monday. These side effects aren't good. I'm not making peace with them....nights especially. I don't sleep because I am either anxious, awake and sweating my ass off, freezing with teeth chattering, or having a nightmare. This drug also gives you a beard and morning sickness. Yay. And I'm wanting to refuse to take any more drugs- not even to sleep. I'm so sick of pills. If this lung, rib, crazy thing is because of Tamoxifen, I am forced to make a decision to either start a new drug or go off of them all together and live a life of being open to new cancer cells if they decide to visit me. This is the crap I think about constantly. My mind is a constant stream of thought and conversation these days. I have so much to always think about and remember.
I'm not me on these things. Not me at all.
On the upside, my hair is growing back so nicely and I dyed it lavender yesterday too. I like it :)
Melody loves her new comfy pillows and fell asleep in my arms 2 seconds after this picture was taken during dinner at Mom's. (see fox news channel in background-lol). I am now able to hold her gently. I love that.
Radiation #7 is on Monday and it'll be the first time I'll be rocking 5 in a row. eek. Better days are ahead.
Wowee- what an adventure we had today, now didn't we?
After feeling like such crap all day yesterday, I tried so hard to sleep last night. No luck- insomnia rules my evenings. I usually sleep on my stomach but since the new girls moved in, I have to find someplace else for the time being to get comfy in. ergh.
Combined with menopause symptoms, I sweat buckets all last night- then froze. then sweat. then froze.My sheets were soaked to the point where I thought I peed the bed in my sleep! eek!
Had nothing to do with the weather, but it's the Tamoxifen's side effects visiting and making themselves known more and more every day. finally get to bed at 4- alarm goes off at 6:30.
The nauseousness I think is also because of the Tamoxifen. It isn't helped by radiation, or stress either.
I escaped morning sickness with both my babies-now this. damn!
I don't sleep well, I haven't much of an appetite, and it's messing a lot with hormones and my moods and ugh. I suppose I'll get used to it, or totally sick of it.
Not a fan.
I made a conscious decision yesterday at 8 weeks post surgery to start back up with living the best I can, just going forward and pushing past the yuck the only way I know how. I'm a little apprehensive when I think about going back to work, I have no idea what that kind of work will be like. But it'll be ok- it'll all be ok.
I planned on walking the boardwalk every day or at least 3 times a week too but a hurricane took away my beach walk . boo.
So I have to find something else. As well as the wii fit, walking around a block or 9, trying yoga again and getting back into life. I'm not sitting on my ass here eating bon bons though. I don't watch much TV either. I go back to work in 4 weeks and normalcy is what I think needs to happen again slowly. This is a big ship to steer though. Not many people understand how much of a different life you need to lead after cancer. And even after the treatments are over- especially after the treatments are over- that life needs to be lived carefully still. I also have children, and I want to be around to see them get old. What cancer and treatments do to the body it also does to the brain. No doubt. The conscious healing continues well after any incision heals or hair grows back. This is not a common cold. I sense my arm will never be the same again either.
I am going to fight. And come back. And....never forget what's under my feet all the time.
So I woke up this morning- really psyched to get on with life, being conscious a little more with every minute of the day, charged up as a good new year always does...... exhausted from very little sleep though- but just super charged. Mark has been so great since Azie went back to school after break with getting up with both kids and letting me somewhat "rest in" for a little bit in the mornings. It's those little things that help so much. Soon they won't be there anymore and life goes back to normal.
Got ready for radiation day #5, and headed out the door.
I got to the hospital in record time of 18 minutes! And early. And then found out the "machine wasn't working properly" so there was a delay. But it was working now.
I swear every day I walk into this place there is something else. The woman who was there yesterday that had to have a "do-over"? - Her husband was waiting for her today. I hope she was ok.
By 10:30 I was out of there and headed back home.
We needed a serious recon mission to fill the fridge- which required a trip to Costco, which Mark and Melody accompanied me on since I cannot lift those boxes of water myself without sending myself to a hospital. I got home from radiation- and instead of lying down like I told myself I would do, I wanted to go out and do normal things as a normal person- Costco is normal life- so sure. I'll go. We'll all go as a big happy family. get our eggs and water and coffee and go home.
I left for Costco with this bizarre feeling of heartburn and hunger pains at the same time. I hadn't eaten yet that day, but I had snacks in the car so I figured I'd eat a bit on the way there.
It didn't take away that weird feeling though. I drove, pulled in fine. we even laughed at the radio personalities. Then I went to leave the car and it HURT to move. HURT like someone had balanced a serrated knife inside my right lung and shook it violently. If I stayed still , and breathed slowly, it stopped. but oh boy- OHBOY. if i mooooved..... it raged.
I tried to pass it off- then I told Mark to just run in, then I got scared and then I told him to call Mom Paramedic. She wasn't picking up.
By the third try I got her on the phone and was crying I was in so much pain. On that hospital scale of 1-10. I was 12.
My mom said to call 911. Then she said to drive to the hospital. Then she said call 911. Mark said he was going to the hospital. I had a choice between the terrible local hospital 5 minutes away and the one I just did rads in a 15 minutes up the parkway- after a very indecisive 2 minutes, and 2 red lights run (Mark was careful)- we got frustrated with Jersey highways and pulled over and called 911 in the Home Depot parking lot in Lakewood.
My first instinct is "Holy crap- I burned my lung at radiation!"
then.... "Holy Crap this hurts so bad I think it might be collapsed"
then....whatever. Just get the EMS and ambulance here. I was so scared, Mark was scared- I have never felt pain like this in my life.
I have a threshold of "physical pain in my life" pyramid. Root Canal with No Novocaine> Natural Childbirth> Teenage Home piercing adventures> Surgery> Inner arm Tattoo> Sewing machine needle through finger> Paper Cut
It was in a cloud above the top of that pyramid.
What the f was this?!
I was crying out for help- it hurt. I don't cry out like that.
Then for a second I was thinking that this might be it.
I laughed and prayed that I never die in a Lakewood parking lot.
Lakewood EMS and Police came. and a medic unit with coincidentally my mom's 2 old partners from she was a paramedic. Henry and Al. Who are 2 men with a sense of humor that you cannot help but laugh at.
Great. On a scale of 1-10,I am a 12. 12!!!! Help ME.
I got into the ambulance is terrible pain, trying to not laugh at these guys, and we're headed to the hospital where I just had my rads done. On the way I asked Henry (Al drove) what he thought it might be. He said it could be suspicious of a pulmonary embolism since I just had surgery as well as being on the Tamoxifen, of which that blood clots are side effects of (In small amounts).
They also gave me 6mg or morphine which helped NICELY. Pain all gone I was able to stop crying for a change. I was put into the little booth in the ER with the more serious folks and waited. It was a busy day at the ER. The lady next to me had cellulitis in her ear and a blood sugar of 400. The man next to me smoked 2 packs a day and couldn't go to the bathroom. Crazy places those ERs. I've been to enough of them, it's interesting to see the dynamic of the people who work in them. It's my favorite part.... The people watching.
They should seriously make a TV show of an ER. It would be a hit.
Had an Xray, CAT scan(with contrast! 2 IV lines!!!! woohoo!) and a whole lot of questions. I also got to exercise the "No BP cuffs, sticks or IVs in this arm please" privilege. I got a special bracelet too. It said "LIMB ALERT" on it. I thought that was funny.
I am learning that 18-20 needles are the good to start and IV line for contrast. With just getting blood they can get away with a 22, but it isn't recommended. See? who needs medical school?
They also gave me a Percoset. So I'm all drugged up.
Those stupid pills again.
(I noticed that after you have cancer,and you go to the ER for whatever reason- they don't look at you like drug addict anymore. It's like the tattoos disappear! Nice eh?)
My mom sat with me in the ER as I had results come back, nothing. They found nothing but sent me off with a diagnosis of "pleurisy/ pleurisitic pain" and a script for solid Oxycodones in case in happened again.
I was freaked.
Earlier in the day, I was at the same hospital in a radiation oncology wing with a machine that "wasn't working right" that day.
Whoa.
Then I asked my attending doctor and he said the cat scan showed no evidence of radiation burning or damage. Nothing.
So something is giving me severe, and painful lung spasms. Incapacitating.
Tamoxifen. Stress. Radiation. Chemo Leftovers. Sleep Deprivation. ...all that crack I smoke...what could it be?
I am going to call Dr. Cairoli and Phyllis tomorrow to see what they think.
Not that cancer is any fun at all besides getting the good parking spaces, but just when ya think you can't get knocked down - you get knocked down more.
Radiation is moving along well in between days off and holidays- I'm feeling a slight start to a 'burn' - but then again- my breast and armpit are completely numb so I'm fortunate to not be able to feel the whole shebang. But I'm starting to feel something. But I'm sick. Nauseousness everywhere. Haven't thrown up since that last time...but golly this really sucks. This could easily be the Tamoxifen too- I just don't know. I'm just nauseous a good part of every day.
The hot flashes, insomnia, and leg pain are also old friends that have come back to roost. Add to the healing of the torso and it's fun time. Mark asked me last night how to describe what bothers me- the feeling of having this surgery has moved past broken glass seatbelts and healed into the nice feeling of an adult wearing very small and tight clothing. Only it's my skin. That's how it feels. Like wearing really tight control top pantyhose all over your body. I guess the tightness of the belly will go away with time. But the feeling of pressure, tightness, and limited mobility - it's kind of annoying. It gets bloated too for whatever reason. My arm is another story- being done with physical therapy I am not sure how it's supposed to heal from here. I am certainly not a fan of not kowing what the deal is with a bum right arm- I just wonder when it will be when I can type for an hour and not have my arm start to swell. Or hurt. I want my old arm back. It's a 24 hour feeling of just uncomfortable.
It's one of those days where I am questioning my radiation again. I got into the waiting room today and noticed the tech sitting down with a woman telling her that what they did didn't work, and they have to re-do something. I don't like hearing those conversations. Especially before I go to get my daily dose and they forgot to put the thing under my knees to hold me still. So I had to do it myself and hold very still on my own. I just want to get through this. With no problems, or conversations that "They didn't do it right". Not a fan of when people who don't have their shit together. Um- ESPECIALLY when dealing with cancer treatments. This is a small slice of what it would have been like if I got my treatments closer to home. Really.
I managed to get an extra 4 weeks from disability- so the rest will help and the radiation can get done without stressing out about work. I'm starting to really stress out about work and just everything today. Ugh. and nauseous on top of it.
Bad day in the cancer reality. Bad day. Boo.
I need a better day than today.
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?
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.
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!
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?
