Thursday, July 29, 2010

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.

Thursday, July 22, 2010

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.

Monday, July 19, 2010

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

Friday, July 2, 2010

...just like a woman

Ok, here's the scoop everyone is waiting 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

Thursday, July 1, 2010

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:

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