Tuesday, December 14, 2010

CaringBridge Update

Hey Bloggers --I updated my CaringBridge Site; have a look:


CaringBridge Update

Hey Bloggers --I updated my CaringBridge Site; have a look:


Tuesday, December 7, 2010

A Class Act - Elizabeth Edwards and a Mother remembered....

Today we lost quite a lady and I define lady as one with elegance, class, grace, strength, intelligence -- clearly the list of adjectives goes on and on.  I've had a hard time following her as she battled breast cancer just like my mom. Elizabeth's battle was public and private and she had already been through the loss of a child and the pain of a marriage that just went the wrong direction. Yet, through it all she kept a clear head and graced us with that beautiful smile. 

From experience, I know what her family must have experienced these last few months as the realization  that her time in this earthly life was soon to end.  I read that her family was with her today. And as I read that, and even now as I try to tap out these words, my throat becomes tight and the tears well up in my eyes as I remember that morning in April 2000.  

It was then that my own mother took her last breath. All those closest to her were in the room. My dad, sister, brother, brother-in-law, sister-in-law, her own mother, Loyal (our hospice chaplain) and our hospice nurse. We made a chain holding hands and in that moment were were ONE taking that last soft breath with her and sending her Home together...think we said the Lord's prayer...  It was as perfect and beautiful as it could possibly be.  Mom's birthday was just a few days ago and every year it is as fresh as it was that day.  

Dad, Ron, Mom, Ru, Me  - happy times long ago
Mom was diagnosed with breast cancer in 1996. She was always terrified of cancer and afraid to have her mammograms even though the warning signs had been in place for years After a cosmetic surgery, the pathologists found the cancer in the tissue and nightmare for her began. It must have been stage IV when they found it but she and Dad didn't really share all of the details with us.  In 1999, she started having vision problems and finally a good opthamologist realized it was a blind spot.  Back to the tests and the diagnosis -- metastasis to her brain. She fought like hell for another 6 months or so. She was so scared but never complained. Like always, she stayed strong for us.  

Her strength and grace are with us now as my family supports my battle. I only hope that I can be 1/100 as much of a lady about this as Elizabeth Edwards and dearly missed and beloved Carolyn Jean. 

Mom -- I'd give anything -- anything to sit in the living room and hear you play this for me. I love you so much and miss you beyond belief. 


All my love,

Thursday, December 2, 2010

"You Look Great!"

Thanks! Of couse I do! I spent about 2 hours doing my hair and make-up before I left the house so that you can't see just how tired and pale I am. The last thing, in addition to the Thousand-Yard stare, I want is for you to see that I am sick. So, I relish in the process of hair, make-up and costume for the day. It's a little bit about vanity but it's more about attitude. When the warpaint is on, then the attitude is  up and I can face the day!

DO NOT GET ME WRONG! I am not offended, but my inner smart-ass has much to say. She is not Nic, Nicole or Coco, she is Nicole Maria to you! Where am I going with this? I'll tell you...

Finding out or knowing your friend has cancer is a big scary deal. I've come to the conclusion that's it is as hard for people who love you to comprehend as it is for the patient to process.  And, that makes it hard to communicate because WHAT DO YOU SAY?  I'm going to hi-jack a combination of articles and blogs out there that will prepare all of you when you hear about a bad diagnosis -- the comments are mine, but you get the picture.

1) Crickets - that would be the sound of no contact. Don't just ignore me.  Um Cocktails with Coco -this social butterfly still has her wings. I know you don't know what to say -- but say something. Email, text, IM -- it's ok to say something like my friend Bitsy told me this morning. "Oh Shit!" . Yup, this sucks but you made me happy that you picked up the phone and called. Thank you.

Gnat and Coco after my Whipple in Jan 2010.

2) Deflector/Force Field - that's the obvious distance between you and me in the same room. Cancer isn't contagious. You can hug me. I will squeeze you back and we will both enjoy it.

3) Uncle Joe - Yes, I know he had cancer and died. So did my mom and she died. So did my gram and she lived 25 years. You might die from it to. Let's not talk about that right now. Don't talk about death; I'm already thinking about it and don't need to hear how terrible it was for someone else. I am sympathetic, but can't quite process that for you right now.

4) ...that time I broke my arm...I know how you feel - NO, you don't. This is CANCER. You don't know how it feels. And if , God forbid, you ever do, you won't ever want to know how it feels. Remember, we were all raised with the notion of (whisper) cancer being a death sentence. So, you won't know how to process that or how it feels unless the doctor looks you in the eye and says "Nicole, the pathologist here at GUH and my colleague at Hopkins find this to be leiomyosarcoma".

5) Goat Seed Oil and Ant Dung - That would be the alternative cure from this week's edition of Crazy Monthly. Ok -- don't tell me that this treatment or that treatment is not good for me. Don't send me every blog on the planet about wheat grass or that there is a conspiracy between the drug companies and doctors to sell the chemo. This is not news I can use.

6) Chin up! - I think I do a pretty good job of that. But some days, things are hard to handle and I'm sad or overwhelmed or just plain pissed off about this.  And I am allowed to feel that way sometimes. Don't tell me how to feel today.  You can listen and know that I'm probably tired and tomorrow I will be my old sunshine-y self.

7) ...mwhamp whma ma ma wmahap...  - What you hear when you ask me about my treatment. I have now become a Subject Matter Expert (SME) with regard to my own care. I'm gonna throw jargon out there that will make your head spin and eyes roll back in your head like Linda Blair.  Just nod and look interested. Or get your phone and and google hypermetastatic activity. Have fun with that.

8) "If you need anything, let me know..." Ok this one is tough. I know you mean it, but I am going to have a hard time asking. And if you say ANYTHING, do you really mean it? Don't get all offended, but don't offer if you won't be there. I really do appreciate your call and your thoughtfulness more than anything. Really, I do. You don't have to do anything.  This will be a burden on my family, you can help me help them by offering rides, picking up groceries, distracting me or them with movies and activities and such.  You can't imagine how helpful these small acts can be and how much I remember each little gesture. Best yet, come up with an idea and just do it. You know me, you know what will make my day.

9) What about the CancerCenters? - Sigh. (Karen, this one is for you.) My personal opinion is that these places are advance hospice. My impression is that the messaging of the ads appeals to people who are terrified and don't have anyone who can remain objective and research for them or play upon that one bad doctor and bad experience. Assholes are everywhere; so don't write off the whole universe for one bad apple. And yes -- trust me -- we have contacted everyone.  Team Coco has the whole 2nd, 3rd, 4th and 5th opinion on the timeline. Ultimately, I sign the consent forms and I get to choose who takes care of me.

10) You look great - Full circle...just because I don't look sick, doesn't mean that I'm not. And guess what, I'm not SICK everyday. Sometimes I'm just tired. And I know this is hard on you too, so I'm gonna do my best to make it easy for you -- even if I don't have to.

Thanks for wading through my novella. I love you all and hope this helps you communicate with someone you love too.  I am 99% certain I am guilty of all of the above in the past.  Most of all, treat me like I'm not sick. I'll tell you if I am too tired or weak today.

Here is a link with a less snarky version of this info:


and for inspiration...


Sunday, November 28, 2010

Cocktails, I Mean, Cancer with Coco -- The MOVIE

Finally -- the casting plan for the movie is complete.  The screenplay will be underway soon but after much deliberation my sister's family and I have put together the casting for the movie. Of course, this is all subject to talent availability and hopefully Bono will be free to write the Oscar nominated theme song. Of course - this will be next year's feel good tear-jerker.  Assume a happy ending!

Coco - Courteny Cox or Jennifer Connelly
Ru  - Tina Fey or Patricia Heaton
Dave - Russell Crowe
Sarah - Selena Gomez or Kiera Knightly
Ellen - Anna Sophia
Noah - Justin Bieber
Dad - Bobby DeNiro
Carol - Helen Mirren
Alice - Doris Roberts
Cheek - Alec Baldwin/Kiefer Sutherland/Bruce Willis
Grammy  Flashbacks - Betty White
Mom Flashbacks - Dixie Carter or Elizabeth Taylor
ShiShi - Debra Messing
Patti - Ali McGraw
Jenni - Ashley Judd
Aileen - Julia Louis Dreyfus
Emma - Abigail Breslin
Loudoun - Will Smith
Tall R - Denzel Washington
Sir - Greg Kinnear
AA - Sasha Baron Cohen
Jeneral - Geena Davis
Susan - Laura Linney
John - Kelsey Grammar
Dr. J - Patrick Dinklage
Dr. B - William Holden
Dr. C - Patrick Dempsey/Patrick Wilson/Alexander Skaarsgard
Colette - Kate Winslet
Linda - Jamie Lee Curtis
Sandy  - Meryl Streep
Ed - Clint Eastwood
Kim - Raven/Beyonce
Le-La - Herself
Ron - Will Ferrell/Jim Carrey/Steve Carell/Ben Stiller/Adam Sandler/
Lori - Sara Jessica Parker
Aunt Sue - Sissy Spacek
Shan - Sandra Bullock
Lisa K - Nicole Kidman
Sher - Lisa Kudrow
Suzanne - Juliette Lewis
PKo'D - Robert Downey Junior
Karen - Victoria Beckham
Dave - David Beckham

Cameos: Bud Bonkers, Taco Denn, Jake  and friends.
Filming will be planned on location in Georgetown, New York, Boston, Coco Lounge, Camp S and Cave Hill Academy.

If I've missed any parts --PLEASE comment or re-cast yourself.  All proceeds from this independent film will be donated to research for LeioMyoSarcoma.

http://www.youtube.com/watch?v=PdZ8esQJcw4 - ENJOY!!!!

Monday, November 22, 2010

When I Grow Up, I Want to Be an OLD Woman

Gram  B-Day about 2004
The first thing a woman thinks about when they tell her she has cancer is her HAIR. Most women spend an inordinate amount of time thinking about their hair and how they should or should not wear it; long or short; color it or not to color it; trendy or classic; straight or curly; thick or thin. It's as much of our identity as our name, color of our skin, profession, religious belief -- it is, for most women, how we perceive ourselves.  Hair may also be what we hide behind or the message we send. 

I've gone through a great many phases of hair in my life. From that first time Mom put highlights in my hair when I was 13 years old, I've been hooked. Hair is an accessory that I can change like a pair of shoes! It's been chocolate brown with caramel highlights and long. It's been short, punky and egglant; it's been platinum Jayne Mansfield blonde; it's been "cry for help" red and I've loved each and every phase -- including my current almost goth soft black with a little splash of blonde by my right jawline.

We change our hair when our life changes; new relationships, ends of relationships; children, death. I even made my hair as close to normal as possible (meaning my lost natural shade) when my Mom was in her last few months battling breast cancer and I wanted her to recognize and remember me. It didn't work, but I felt better.

Lately, I find myself dreaming about my Grammy's luxurious silver curls. Oh she had lovely hair. She started to gray early and I never knew her without a thick head of silver curls. And she was particular about her hair as she was about her grooming in general. Her hair was always clean and "done". You know -- set on curlers and styled at the beauty shop once a week.

Not long ago I had to the good fortune to accompany a friend to a memorial service for Marines. The ceremony was lovely, but I found myself gravitating to the wives and their lovely blue hair. They smelled of White Shoulders and Estee Lauder. Their eyes were bright and their skin was porcelain and crinkly and they were happy.  How I missed my Gram that day. And I couldn't take my eyes off of the hair. 

Why am I so obsessed with the silver hair? Am I afraid I will have to have chemo and lose it? Not really -- I know I will collect all kinds of fun wigs. I see a pink Britney bob. And then I dawned on me...will I ever be that little old lady with the bright eyes and crinkly smile and luscious silver curls?  I think it's because I will be that woman.

Wednesday, November 17, 2010

Kahunas, Confidence or Courage?

So there I am in the pre-screening room at the Betty Lou Ourisman Center at GUH in my stylish hospital gown. Edith told me to make sure it opens to the front. Yay -- that's a great look for all of us as we creep out of the changing room clutching our gowns and hiding behind our handbags. I take my seat with my five minute friends and join in nervous chat with the ladies.  Even the most confident woman has that thousand-yard stare on mammogram day. I had already been at the hospital all morning to talk about a radiation treatment v. surgery for the new mass attached to my large intestine.  We will cover that in more detail later.

So "Sally" comes marching out of the screening room chuckling about how the technician had to take three pics of her boobs because she is so well endowed.  Instantly, we are friendly hens and clucking away about our yearly boob-check. I learn that these three ladies drove up from Dumfries, VA area to have their mammograms. Talk about Friendship! What a great way to encourage each other. I declare that they simply MUST go have a fabulous lunch with a glass of champagne and suggest a few great spots.(Hey maybe that's how I should have planned the day...) We trade a few comments and giggle.  "Betty" looks over and says..."Those are some tights. It takes some confidence to wear those!"

"Ha! Honey- after everything I've been through, I'll wear whatever I want!.  I felt like I was channeling Sally Bowles and her green nail polish  -- because it is pretty!

Was it confidence that made me pick that costume today? Courage or just Kahunas.  I thought they were pretty and why not wear them!?! Or was it because I have a crush on someone and hoped he noticed?  Well, maybe a little bit of all of that. And after all, why not enjoy the pretty things.  After all, Life is a Cabaret Old Chum! http://www.bing.com/videos/watch/video/life-is-a-cabaret/fc458b84abb18ef8ee58fc458b84abb18ef8ee58-296625701112?q=life%20is%20a%20cabaret&FROM=LKVR5&GT1=LKVR5&FORM=LKVR5

Toodle Oooh!


Tuesday, November 16, 2010

Depends, No really DEPENDS!

Just when you think that you would never have such a conversation, you find yourself enjoying discussing a conversation about grownup diapers.  How did this happen? Well, in typical roundabout fashion I have become an expert on Depends.

A few weeks ago, my niece -- the Bean, sent me a text begging me to come to visit for the weekend. We had great fun having a slumber party Saturday night and watching Robin Hood. We googled a great many historical facts about Robin Hood(http://en.wikipedia.org/wiki/Robin_Hood) and Richard the Lion Hearted(http://en.wikipedia.org/wiki/Richard_I_of_England). There was also quite a dispute as to whether Cate Blanchett as Maid Marion is an English rose or just quite plain.  It is still up for debate.

Oh yes...On Sunday the girls -Sissy, Bug, Bean and I set out to be ultra productive. One of our stops was to go see Grandma. Grandma is Sissy's husbands gram. Grandma is smart, sassy, outspoken -- tough on the outside and gooey nougat on the inside. She has been a long time warrior against cancer and thus loved and respected. This also means that she and I have much in common despite our 40 some odd years in age difference.  Grandma is quite nimble with the knitting needles and had fashioned a lovely lap afghan for me. Since she toiled over it and selected the colours to match my living room, I was honored to go see her in person and accept my gift. As you can see, it is quite pretty. Mr. Bonkers loves it too and has claimed it for his own.

Well, like any two old hens, we simply had to discuss our conditions. We both share some sensitivities with the digestive system -- embarrassing, frustrating but it is what it is.  Our commiserations opened up a 30 minute discussion regarding Depends. Yes-- adult diapers. Well -- we talked about the Depends Brand, CVS store brand, alternatives, where to buy them; when they were on sale, who has coupons, and best cost per unit.  Of course this prompted me to grab the iPhone and search away. Now Grandma is on multiple lists to receive coupons, free samples and the offer to go pick up Depends or have them delivered to the door.  We really spent 30 minutes talking about Depends. I think my sister dozed off at one point.

I still hope I never need them, but at least I will know how to get them when I do. Aaah...you laugh but next time you see your great Grandparent or your aging Mom or Dad -- you will find yourself happy to know how to find the right Huggie.

Hugs to all of you! I saw some doctors this week and more to come...I'll keep you posted.


Saturday, November 13, 2010

Not your Saturday morning from the 90's

Geez -- it's not even a Saturday morning from the early 2000's!  Just a couple of years ago, I'd hopping up out of bed to hit the gym, the trail or the snooze button after a late Friday night out.  These days a big Friday night is heading out with a good gal pal to see a movie. Last night's feature was RED -- who know a movie about retired CIA agents would be so damn funny!?!

Oh -- hello readers. You are wondering who is the Coco? Well...that's a long and short story. I'm in my mid-40's -- well that's how many years I have been on the planet.  Somehow, I am mentally still somewhere around 28 or 29.  Those were fun, if misguided, times. If you ask others, they will smile and say Coco! -- that kind of sums it up. Life of the party! Friend on which you can Depend! Flirt! Professional. Sister. Daughter.Aunt (one of my favorite labels). Outspoken....the list goes on.  So what? Right?

Right -- Just a 40s are the new 30s woman having a good time and enjoying everything life has to offer. (ALERT) (here is the serious part)Then I started have -- well girly problems. Yikes.A check engine light went of on my forehead. The gyno says (with tears in his eyes...) "Nicole, we got the pathology reports back - you have leiomyosarcoma."  Um..ok...heavy sigh...So that's cancer right? So what do we do next? I'll tell you.

Surgery. Remove 12cm or larger cervical/uterine mass - about 5 weeks in and out of the hospital.
Radiation. 25 external treatments. 3 internal
TPN(http://en.wikipedia.org/wiki/Parenteral_nutrition) That was 4 days in the hospital
Get a job...I'll tell that story another day
Surgery - a WHIPPLE, no not Mr. Whipple with the White Cloud but this :http://en.wikipedia.org/wiki/Pancreaticoduodenectomy. That pretty much took up Winter 2010.
Back to work and do everything you can to have FUN
Ooops...another mass....I'll keep you posted.

Back to Saturday morning....Now instead of dishing with my girls about last night's adventures or lack thereof and how did we spend that much on the tab, I am cleaning house and writing this blog.

So -- here is our blog covenant. I promise to try my best to amuse you, motivate you, support you, did I say amuse?  You are allowed to call me out if I whine or if I am nasty. I promise to change the names to protect the guilty ( you know who you are). Please do send me news that I can use but let's not share horror stories about the C word out there. It's scary enough and Kris Carr said -- Life is too sweet to be bitter.

Loves ya!