Why I Race - Komen Austin newsletter

I wrote my story for the Komen Austin Race for the Cure newsletter and it was released August 2010 - you can see it on the website HERE  but i also copied it here - it was inspiring and emotional to write - i hope some of you will join my Komen team The Glitter Dropz

I race because of this huge, loving, inspiring club of fellow survivors!



In 2009, I participated in the Susan G. Komen Austin Race for the Cure to honor my children’s stepmother who was diagnosed with breast cancer at the age of 32. Her diagnosis was shocking and felt tragic to us, driving home the concept that it can happen to anyone. It inspired me to get health insurance, which as a self- employed person is not the easiest thing to do. But at least I didn’t have cancer.


Six months later, I felt something in my breast and had a strange feeling. No, there was no way I could have breast cancer, not me! I also had breast pain, googled it, and self-diagnosed a hormonal cystic fibroid. Whew! Nevertheless, at 42 years old I had never had a mammogram, so I scheduled a regular check up and was sent for a mammogram.


After viewing the mammogram the doctor sent me for a biopsy that day! It was a Friday and I had to wait over the weekend for the results. I remember thinking that I didn’t want my life to change, but it did when the phone call came. Getting the call that I had breast cancer was a call I will never forget. It is impossible news. What about my kids, my plans, my breasts, my money, my happiness? What was going to happen to all of that?


I found that inside of us there is an amazing strength to do what we need to do when life throws us challenges. I told my family and friends, I made my appointments; I put on pretty clothes and makeup. I took action. Taking action is a powerful tool.


Due to various circumstances, what was originally planned as a lumpectomy became a bilateral mastectomy. I started chemotherapy on August 10th. I am amazed daily how happy I am. What originally felt like a tragedy has actually helped me be happier than I have ever been. The gifts I received since my diagnosis are immeasurable. Words from strangers on my blog, casual acquaintances offering help, reuniting with old friends I haven’t seen in a long time, phone calls from survivors I have never met, and of course the huge love and support from those close to me. Generosity is abundant and it makes me happy and strong, and I cannot wait to pass it on.

I thought I was a tough and strong, but now I KNOW I am tough and strong. Yet I have also learned to yield, ask for help and accept help. That has been my biggest lesson; strength does not mean that I have to do it all by myself.


Breast cancer sucks, and the frequency of its diagnosis is shocking. It’s physically and emotionally challenging, but in some odd way we are lucky. We are part of a huge, loving, and inspiring club. I am thrilled to be able to race at the 2010 Austin Race for the Cure, along with my fellow warriors, those that are survivors, and those that support us all.


Warmly,
Nanette Labastida
3 ½ month survivor

Highway 71 revisited...

this past thursday i attended my 7th Bob Dylan concert at the new Backyard....! My first was when i was 12. I'm 42.
I've talked Dylan in this blog before, and anyone who knows me well knows i'm a diehard fan. love him with a passion.
I bought tickets for this show, back when i knew i had breast cancer, but i had NO idea where i would be in the treatment of it. I just bought them and hoped.

my last post i updated that my final drains were finally removed, well since then i have steadily been feeling better & better, gaining strength and feeling more "me". I have started taking little walks in my neighborhood & doing some gentle yoga so by the time the Dylan show date came i felt like i was ready to handle it.
It was perfect.  We didn't park far, we got an excellent spacious spot with a great view of stage, and it was miraculously not too hot.

It was one of the best Dylan shows i've seen. He is sounding goooood, the band was amazing, the SOUND at the new Backyard was perfect, the setting ideal, the company loving, and i was there....i made it, and i felt good & happy throughout.

It feels special & right that my first post surgery night out was at Dylan, in the hill country with my best people. I am lucky.

Oh...and he played Stuck inside of Mobile with the Memphis Blues Again...ohhh mamaaa

schedule schmedule

i really need to stop with the expectations and planning
i always think of myself as so go with the flow and easy going, and really i am, but in this, i have found that counting days, figuring out when stuff is gonna happen or be over, gives me a sense of control, except it doesn't...

so first of all, i didn't start chemo on the 27th, i changed that to Aug 10th a while ago, cos somehow i just knew the 27th would be too soon. I was right.

I am recovering from surgery a bit slower than i expected.
the magical date of 2 weeks after surgery came, and my drains weren't ready to come out. 2 of them did, but the other 2 were nowhere close. drains are annoying, yucky, and constricting. my warddrobe is limited to the camisoles with pockets, the tube sites hurt. and it is frustrating to not be like i was supposed to be.
I'm also still in more pain and more tired than i imagined i would be.
Then i got a low grade fever &  some redness at one of the incision sites. Luckily i had a prescription for antibiotic on hand so hopefully that will take care of any potential infection.

Good news is today i did get the last two drains out - FREEDOM! sadly it hurt so effin much i cried my eyes out, and it pretty much wiped my whole day out. my poor sweet plastic surgeon wiped my eyes with tissue and joked i was crying tears of gratitude for my Dr. he felt so bad.
Also a bummer is that i didn't get expanded at all, i haven't once since surgery, he wants to wait till the redness goes.  this is when he said the words "you are a bit behind schedule, but it's all good" - thankfully what imprinted was the it's all good part. 
I take it as a lesson, to let go and be ok with a plan and schedule that is out of my control. And to trust.
I tend to catastrophize things if it's not EXACTLY how i was told or what i expected, and obsess that it must be all wrong.  The people around me are reaallllyyy good at recoginzing that and snapping me out of it. 

oh, and Dr H wants to walk on my Komen Race for the Cure Team, even though Beth & I warned him he would have to don a bedazzled tee shirt, i think it was the promise of Tito's bloody mary's. whatever, it's awesome.

redux of a bad moment...

i have heard, more than once, that you are a cancer survivor from the moment you are diagnosed.
i also heard once that SURVIVING the diagnoses is the hardest part
That i believe. I recieved my diagnosis over the phone, in my car, luckily not driving yet. I was expecting the biopsy results. I had emerged from an accupuncure session with multiple missed calls and a couple of messages from the Women's Imaging Center, so i knew not to call when i was driving. Just in case it was bad news.
It was.
The calls were from Dr O'Connell. I had not met her, turns out the day i went in was one of the very rare days she was off, but they told me she would be the one to call. She has a slight Irish accent. That i will never ever forget.
I don't feel like trying to explain all the unexplainable thoughts that went through my brain in those moments of hearing those words. It's really hard to re go through.
But i do remember her accent. And i remember thinking how hard it must be for her to do this every day. And then i went into practical info mode...met with the actual Drs that would be tending to me, and tried to forget that part of it all.

Well today i had an amazing oportunity - my best friend was signed up to take me to a follow up Dr appointment this morning, and we decided to make a sorta symbolic day of it and she scheduled a mammogram right before it at my same old place. Like a dual support pact for the boobs.
While she went in to the imaging room, i spied Dr. O'Connell, and i suddenly got up and went to her and introduced myself. I told her we hadn't met but that she was the one to call me. I told her i just had a mastectomy. And I told her i wanted to meet her to erase the negative imprint memory of her voice. We hugged. We talked about my health. She noticed my accent (what accent??) and could tell i had lived in UK so then we talked about marmite. :)
It was very bondy, and kind of emotional. I feel really lucky i got to do that.

post-op deets

hehe, hospital gown pre-op

hi friends...
so it's been a week & a half since surgery and just over a week since i got home. i think i needed to get out of the emotional & physical fog before i could update on here, i get exhausted talking, and also had i written during the initial post op haze there was high risk of major TMI - hahaha

the hospital stay is kind of a blur, but a fun one. I didn't have any pain really thanks to the lovely iv and constant flow of juice. i did often fall asleep mid conversation, or worse i remember waking up from little naps and dreams and start talking to whoever was there and have no idea what i was really talking about, that was cute. My best friends, mom & boyfriend were all there on & off the whole time. Elizabeth brought me a cupcake, took me for a walk around the ward, Beth helped me brush my teeth, Kati bombarded my room with hot pink roses, giant balloons & pink monkey, Laurie passed on "chemo bear" that i acutally snuggled one nap, Cory brought her sunshine as one of my first faces i remember coming into focus, my dude braved the dreaded cot to stay all night, Jan, Danielle, my bro even my cute dad, barely out of hospital himself. 
All the tweets & texts & facebook comments add to the super heart filling feelings that make all this so much more bearable.
Beinig home has been amazing too, many thanks to Roggie for setting up food delivery schedule, so nice knowing my fridge is constantly stocked with super healthy yummy foods.
Had some pain transitioning to pain meds at home, having the drains is a drag. being able to take a shower is a blessing yet it's a pain in the ass  to do and wears me out big time.
I'm surprisingly not stir crazy nor do i have cabin fever
I'm a bit bored and have watched more tv marathons on tbs, bravo, food network and tlc to last a lifetime.
the port site creeps me out a little, i won't go into detail but if you know what that is you know what i mean.
The expanders are as i heard, uncomfortable
I'm tired of being on pain meds - i wanna be all they way clear headed, but i'm learning to enjoy the veg
I was surprised at my OCD ness when i first got home, i never have had to tell people what to do in such detail before, am letting that go
Getting better at accepting all the help without guilt
At times the future vision is overwhelming and i cry, i can't imagine doing yoga, or running, or getting dressed in my usual clothes, i can't imagine myself  dealing with chemo after this, i can't picture myself with different boobs, being care free, and when i think of the final stage not being till Nov/Dec i can't breathe.
But then someone keeps me focused on now, and I'm OK, now.
Or i count my humongous blessings and see the big picture.
My fear of looking at my physical shape post surgery was bigger than the reality - i expected the worst emotionally, but found it strangely easy. This isn't "me" it's just the beginning, not the finished product.

so despite physical discomfort and expected tough emotions at times - i'm really doing well. and i owe so much of it to my loves who are taking care of my heart and body, esp my bf who is heroic in all he does for me - although he would not like to read that - i love you guys.
thanks also to the BCRC (breast cancer resource center)  for providing the ultra cute and handy camisoles to wear, they have pockets to hold the drains, BEST INVENTION EVER!

next up...drains OUT, expanders expanded...we'll see how that all goes down

...just like a woman

Ok, here's the scoop everyone is waiting for...my treatment plan, first facts - then feelings:

(oh and i'm listening to Blonde on Blonde as i write, which both comforts me and makes my eyes well up, Dylan always has a way of allowing me to feel how i feel, if you know what i mean)

Thursday July 8th I'm going in for bilateral mastectomy with reconstruction using tissue expanders, i want the works :-)  - during surgery they will also insert a port, because July 27th i will be starting the dreaded chemo.

I will be getting TC chemo, 4 rounds every 3 weeks.  i kept hoping i would magically be exempt, but my oncotype testing, despite my strong progesterone & estrogent receptor positive-ness, still put me slightly into the intermedeate range of reccurance within 5 years.

After chemo is done, I will have the replacement surgury, and from what i've seen and heard, it's a piece o cake and the joy of no  more tisssue expanders overtakes it all.

then 5 years of tamoxifin

so weird that so much of this is my choice to make - but i felt such a strong pull to doing whaterthefuck it takes to ensure that on the other side, i live the best happiest, as low stress as poss, ultimate quality of life. And not undergoing all this stuff, would mean too much worry, what iffs, diligent monitoring, all the stress inducing stuff that actually is a factor in getting cancer.

I don't wanna lose my hair, little by little i try to get to picturing it, imagining what i will do ect.. Jenn, my exhusbandscurrentwife had the cutest scarves when she was in chemo, she learned them by watching african american hair videos on youtube, who knew. She'll teach me :)
Everyone says i need a hot pink bob wig, haha, it's true i do.
I admit, i'm kinda excited about the cute short haircuts i will have as it grows back, i always want to cut it but never have the nerve. In fact i will probably get one pixieish cut right before chemo.

I feel at peace, it is what it is, like i said, i kept hoping i would be magically exempt from the whole ugly scoop because i'm Nanette and i'm special,  but somwhere in the last week, i came to realize that this is what it takes, thousands of amazing women do this and worse. I'm not special in cancer. we all are.  I will be special in other ways.
i am scared tho

AND - I'm determined to make it the Bob Dylan show August 4th

Just Like a Woman - lyrics by Bob Dylan

Nobody feels any pain

Tonight as I stand inside the rain
Ev'rybody knows
That Baby's got new clothes
But lately I see her ribbons and her bows
Have fallen from her curls
She takes just like a woman, yes she does
She makes love just like a woman, yes she does
And she aches just like a woman
But she breaks just like a little girl

I am not a hairdresser but i play one...for Locks of Love

I am so not a hairdresser, even though two of my best friends are, and i worked in a salon forevs. so i was really pretty excited but really more HONORED when my friend Jennie Chen asked ME to cut her hair for locks of love. 
Well, not exactly.  Jennie had been growing her hair & taking super good care of it for 20 months, and was ready to donate it to LOL, she had an event lined up for it at Waterstone  and a wonderful hairdresser named Joel on board to cut  her hair. But she wanted someone special to do the honorary initial cut, and she asked me. :)
Here is Jennie's blogpost with more details and info about her commitment to raising money for cancer & locks of love:

http://misohungrynow.blogspot.com/2010/06/waterstone-offers-25-haircuts-to.html

here are some pictures!

10 inches!

Adorably cute Jennie with her new dew

Cupcakes from Sugar Mamas! the mint choc chip ones are vegan mmm

Komen Race Team name help (AND CONTEST)

This year i want to make a team for the Austin Komen race for the cure.

BUT - i can't think of the perfect name - has to be glittery of course, unicorns acceptable. Cute essential

My daughter wants "Glitter Palz" sokay, but not 100% sold

Glitter Every Day gang? Glittercorns - sigh....

Come on - give me some ideas - anything! if i pick yours i'll pay your Komen Race Entry - how bout that!

Please share this, i want tons of ideas SOON :)

lesson of the day

I've told the story of the finding out i had breast cancer a lot of times - but only one person, and it was recently, said i should blog post it. duh, i totally should, cos there is a moral to the story....

so.....several months ago, i started to notice pain in, around my breast, it was really bothery, but it went away, it came back the next month and i realized it coincided with my cycle, starting right around ovulation. Breast cancer entered my thoughts, but, my ex husbands wife was just beginning her fight, my dad was in ICU at the heart hospital, law of average, universe fairness, brain rationalization meant that of course that was rediculous.
I did feel something, but not like what i thought a lump was, more of a hardness deep inside.

Third month i did google it - i googled "breast pain" - found exactly my symptoms, hormones...fibroid cysts...goes with cyle...some women worse than others...some get cysts removed even...

I googled "breast cancer" & "breast cancer pain" - nothing.

phew, google to the rescue. self diagnosis complete. life goes on.

then finally in May i decided to get my general act together and make a check up appointment. I hadn't had health insurance in five years and so hadn't been to the dr in 5 years, shabby i know.
so with insurance now in place 5 months....i went, got the usual and of course she said, you are 42 you need a mammogram...had it the next day...low and behold they were concerned by the pictures, biopsy that same day and tadaaaa..

SO - the moral of the story is DO NOT IGNORE BOOB STUFF!

no matter how small, how weird, how probably unlikely it is, no matter your age, family history, general health, just go. I feel so lucky that the cancer i have is non aggressive, it makes me sick to think that had it been, with the delays in getting it checked, i may have been in much worse shape. much worse

In da club

tLast night i had the pleasure of sharing a drink and chat with a new wonderful friend and fellow breast cancer sister. We had the usual BC bondy banter about this procedure & that result, what we went through this week, what's next. We also deepened our friendship by finding out we had some mutual friends and shared austin history.

Then at some point she told me about a friend, another mom from a kid's sports team, who was recently diagnosed with cancer, she had just taken dinner to her. But this other woman has a different cancer, a rare weird cancer where they cannot determine where it started, and now, it is everywhere in her body, and all they can do is keep her going with various chemo treatments.

This made us sad, and then led us to a mutual and odd realization. We are lucky we have breast cancer. And furthermore, we two happen to be lucky to have types & stages that can be dealt with. We can just remove a boob, or a lump, one round of chemo perhaps and have a damn good chance of never dealing with it again. (pls note, i am not minimizing the ordeals & trauma of treatment & prognosis, it's as ugly & gnarly & sad as any)
AND
we have a club. We have pink, we have incredible resource centers & groups, we meet and bond and show each other scars like they were princess tiaras, we show off new 20 year old racks, we have walks & tee shirts, parties with pink drinks, cute phrases like "save the tatas" - it's really pretty fun. all that stuff. it helps. it strengthens. it affirms. it fills one up with a new love & gratitude for the experiences. it's weird.

barium breakfast of champs

so this morning i drank a lovely mochachino dose of barium in prep for my CT Scan, then went to the ARA where they injected me with lovely radioactive stuff, in prep for my later bone scan.
Then i went into the CT scan where i got more stuff injected into me for contrast or something. CT scan easy, breakfast break then back for pretty easy bone scan.
Got to spend fun time with my buddy pj who makes totally inapropriate jokes, it kept me entertained and light throughout the stress

THen later today got some kick ass news. MY BRAC genetic test came back negative!! this is huge, especially for my daughter & her daughters, i'm so happy. Also the CT scan results were all clear! no cancer in the rest of my body.
Bone scan resuts tomorrow
Oncotype results the 24th
Next Oncology appointment to map out game plane with all results in - the 29th
So after that i will know what the rest of my summer will look like :)

muthereffin seesaw

the roller coaster is one thing - emotional blah blah, dizzying, familiar

the seesaw - attempted balance - attempted being the word of note. otherwise the symbolic metahpor would be a scale

the hardest thing right now is dealing w my kids, i try to have more patient together time right now, and end up being zero tolerance impatient mom as their demands compete with my filledtothebrim thoughts, not fair at all i realize.

A new level of balance on top of all that i've only vaguely mastered as a single parent

searching

so i have pretty much avoid googling any cancer stuff. I don't wanna over drama myself, read scenarios i can't imagine or handle. Too much info overload. worst case scenarios. stuff that's not relevant.

I did one day read some forum topics on Pink Ribbon Cowgirls and even that overwhelmed me with the terms i didn't understand and the descriptions of symptoms & side effects.

But a few weeks have gone by, i understand what MY terms mean for the most part, i decided there were a few particular & focused things i wanted to read about.
So i sat at a starbucks as my home internet was down, and typed the words breast cancer estrogen soy, got results, opened a few links in new windows and...guess what? mini public meltdown
it wasn't the subject matter or info uncovered...

I just cannot believe that these search terms relate to me, it's just unbefuckinglievable to me. it still doesn't seem possible. and it doesn't feel fair

It is at times too much to have all these thoughts and decisions, playing different scenarios playing in my head constantly as i try and do the other normal things in my life, mommying being the hardest one to do with ease.
i never knew mental fatigue like this, i'm tired even tho i sleep well

i know...more JUICE :)

listomania - blessings & thanks

I love lists, so i'll just go ahead and say now that i'm gonna make lots of posts that are lists - todays is about the things and people that have blown me away

What i'm thankful for:

1. whatever it is in me that is making me not feel completely devastated and really generally happy and lucky, maybe even more so than usual. I feel pretty damn rich right now.

2. modern medical advances

3. my 5 core loves that are taking care of my heart & body & mind.

4. Daily Juice

5. Other amazing people that have either said words or done actions that mean the world to me and literlly blow me a way with their unbelievable acts.

6. Wonders & Worries http://www.wondersandworries.org

7. vegan chicken salad from wholefoods

8. My ex husband & his wife - taking this in stride and with strength despite the fact that they literally JUST traveled the same road.

9. all my new clothes, my clean house, my glittery quilt

10. and hugely, my friends who have gone or are going throught= this, and the friends i'm gonna make as i go. It's a club one may not wish they had to join, but it just may be one of the most rewarding, love filled, inpsirational & comforting.


there are a million more, the list could be endless

awaiting awaiting

quicky just to bring people up to date...warning: full of facts & terms

Results of surgery & pathology:
No lympnodes involved = very very good
they were able to get clear margins - BUT it was bigger than they expected and there were a couple of lesions, these two factors are why i am having some more tests and why they have not completly decided on what the next course of action is. (they being mostly my oncologist)
not agressive
Estrogen + which is good, hormone treatments are very effective
Progesterone +
HER2 negative (i think, for some reason i'm spacing on this pretty imp info but will call monday)
Stage 2 A

What we are waiting for :
Sending "it" off to test it's Oncotype - this is a rather new test, where they can tell if a type of cancer is even responsive to chemo. if it isn't then no point going through that ordeal

BRAC test, for the genetic mutation, takes a couple of weeks

MRI - i had this yesterday, i had open MRI cos i'm so damn claustrophobic and still i took an ativan. It was easy but i was totaly exhausted all day and lets just say i shoulda had someone else drive me home

CT scan & bone density scan scheduled for the 15th - bleachhhh, i have to drink "Mochachino" flavoured barium. gag gag gag gag gag

i'm ok with this waiting - it's like having a vacay, or a chance to get stuff done, have some fun, ect...i've envisioned all the possible scenarios, played with what they look like, sometimes i decide that one is better than the other, but all in all i'm just gonna be ok with whatever it takes to be ok.

today i'm kinda sick, completely unrelated i believe, just actual sick which is totaly not fair, except that people feel even more sorry for me and therefore my kids have been swimming & playing with neighbors all day. Being a mom & sick sucks, being a single mom and sick sucks beyond belief, that's all i have to say about that. you know what i mean.

Glitter trail

so this is the quintissential first blog post - tadahh! I'm calling this blog "glitter every day" after the title of my original breast cancer announcement blog post I wrote in my real estate blog RockNRealty.

I decided i did not want to make that blog my cancer blog.

Actually i don't want this to be my cancer blog, but alas for now, that is what it is.

I need a place to update friends & family, to chronicle my progress and procedures, to celebrate my victories, vent my sadness and frustrations, to immortilize the multitude of blessings i have recieved and will recieve, to express my love and thanks to my heroes & anchors that are riding this with me. It may serve in practical ways to point out date markers of appointments and stages, and it will serve in emotional ways as a release. I can't always talk, i can't always reply to everything, i sometimes feel awkward revealing the weaker moments. It's not all pretty, but sometimes it is. It'll all be here.

I'm very open about this - i welcome sharing this with whomever, i welcome phone calls and emails, i welcome offers of help, introductions to your friends who may have gone through similar sitch, and i welcome anyone who feels it, to share my stories with others.

When i wrote that first post Glitter Every Day, i really did mean it literally, i love glittery things. And somewhere in me i also felt the symbolism, but one cannot proclaim and create a symbolic image on purpose (well an ad agency can), but when i read all the comments on that blog and on facebook and in emails, i realized the full potential of of Glitter Every Day, that is how i am and how i intend to take on all this crap.

That itself is one of the first of many blessings i have discovered - one doesn't always get an opportunity to see how others view you and have viewed you for many years and it's unbelievably affirming. I'll take it!

I also will most likely not capitilize the letter i in this blog, professional schmofessional.
I may now and then post cancer stuff on RocknRealty, but mostly about events, races, fund raisers, important information, but they will lead to this space for the more personal updates.
I'm so happy that my job as a Realtor is so flexible so as to continue working at my usual level and have time and space to go to appointments, be it medical or spa pampering related (i intend to do a lot of that yippee!)
so first post over & out - read, comment, share, and be happy, that's the key to it all.
xox
Nanette