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...