2 Year Anniversary

"When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold. They believe that when something's suffered damage and has a history it becomes more beautiful." - Bloom

Friday, April 27, was the two year anniversary of my cancer diagnosis. I always hear people talk about cancer as a "journey" - but ultimately it is one walked alone. I remember trying to decide whether I should have my hemicolectomy surgery at the NJ Cancer Center or at Sloan Kettering. It was agonizing, and the only topic of family discussions for a solid two weeks.

Finally, my mom took me aside and said, "You know that you have our love and support, and we can keep going over the pros and cons of each center for as long as you need - but ultimately, when you are lying on that table, it's going to be just you and the doctor; nobody else. You can't doubt your choice."

My younger body was riddled with scars. Most of them are now more than 20 years old, and have faded so much that they are barely noticeable to the naked eye...  reduced to an existence sitting on a shelf in the hazy halls of dark memories. Once in a while, I find myself wandering those halls - remembering cigarette burns and black eyes - and marvel at my tenacity for finding a way out. I've never been ashamed of my past, nor have I ever felt sorry for myself... it is simply part of my life's story; nothing more, nothing less.

Now my body has a new scar. It's a strange alien like thumbprint above my bellybutton - where they put the surgical port in that took half my intestines and lymph nodes out. It's a reminder of how my body was taken from me for a while. I still haven't gotten it all back, but I'm making progress.

I'm eating, running outside, and even took my first spin class in 3 years. My body is starting to look healthy again - except for that alien scar. To an outsider, the scar may not seem like much - but for me, it has some strange mystical power ... making me forget the strength I once had. As Humpty Dumpty told Alice, when it comes down to it, the question is: which is to be the master - the cancer or me - that's all.

Home from China

We got back from China on Sunday. 

I couldn't post while I was overseas because blogger - like many other social media sites - is blocked by the Chinese government. I really want to share some of my incredible experiences, but quite frankly I'm too darn tired. (I'm still adjusting to a 12 hour time difference.)  For now, I'll  just post a few of my pictures in order to preview some future posts on the history, cuisine and culture of China.

We saw such historical structures as The Great Wall (above) and Terracotta Warriors.

We were able to sample some traditionally authentic Chinese food - jellyfish and all.

We also got to chuckle at some of the extraordinarily awkward translations... like this one - a donation box at the airport labelled: "Shanghai Workers Foundation for Assisting the Difficult" 

Zaoshang Hao

Good morning from Newark Int Airport! Gary and I are about to embark on the adventure of a lifetime - 11 days in China.We have already hit a few minor snags:

* On Monday Gary found out that he needed a root canal or his tooth might explode in-flight. He got some emergency work done yesterday.

* We got to the airport and Gary had no seat. That's since been resolved.

* I had a minor setback with my walking pneumonia, but the steroids seem to be keeping it under control.

But otherwise we seem pretty ready: we put travel notices on our bank and credit cards; got a charger and dissolving caffeine strips (coffee isn't common where we are going); and saw our doctor who prescribed antibiotics in case we get sick.

We also exchanged $140 for 800 Yuan.

Next stop Beijing.

- Posted using BlogPress from my iPhone

In Memory of Rachel

Rachel Cheetham Moro (1970-2012)

“When I first started my blog in 2009, I had no idea just how important it would become in helping me deal with this disease. What has surprised me even more is just how many people are interested in what I have to say." - blogger Rachel Moro

I have heard people call the act of blogging a way to share your unedited self with the world.  "A blog is a personal diary. A daily pulpit. A collaborative space. A political soapbox. A breaking-news outlet. A collection of links. Your own private thoughts. Memos to the world." (blogger.com)

For me, Channeling Jackie-O was initially a way to share information about my rare cancer with my family and friends in California, but eventually it became much more - a way for me to connect with other cancer patients and advocates. I am incredibly grateful for the amazing online community support that my blog has provided me, and for the new friends I've made through my writing.

One of my blogger-friends, Rachel, recently died from stage IV breast cancer. And I miss her.

I miss her comments to my posts, and reading her incredible words - her "unedited self" - that she was able to share so eloquently with the world.

On December 31st Rachel posted a comment to my blog about the Laurita Winery: "Definitely going to have to check this place out! - Rachel" After reading her comment, I had thoughts of us finally meeting face to face - two Jersey girls, swapping encouragement and stories over a bottle of Chardonnay.

Rachel died Monday, February 6th, and there is an aching sadness that I will never have the opportunity to meet her in person; she was only 42 years old.

Rachel was brave and talented, and like all great writers, she was a keen observer of life. As a young women twice diagnosed with breast cancer, Rachel was unabashedly critical of the "pink pop-culture" movement. Through her blog, The Cancer Culture Chronicles, she challenged her readers to move beyond pretty pink ribbons and balloons, and take a long hard look at the ugly truth about metastatic breast cancer, which has somehow gotten buried underneath mountains of pink glitter.

Rachel was an intellectual powerhouse at crunching numbers and calling out the foremost cancer organizations for not doing more (especially Susan G Komen Foundation - see Rachel's post "Komen by the Numbers"). But what I loved most about reading Rachel's blog was her dark humor about the daily absurdities of living in "cancer world" as a permanent resident - rather than as a tourist merely passing through during a charitable bike race or 10k run.

If you like my blog, you'll love Rachel's; below is an excerpt from one of her posts "Pink Proxy". My heart goes out to her beloved husband Anthony, to her friends and family, and to her extended "blogosphere family" - whom she touched through her honesty, wit, spirit, and unique outlook on life.

I've never been very good at goodbyes, so I'll let Shakespeare do it for me: "Now cracks a noble heart. Good night, sweet [friend], and flights of angels sing thee to thy rest." (Hamlet)

"Indeed, the writing does send out tentacles that demand to be heard and invariably evoke a response and hopefully a call to action of some kind. We must keep writing to keep being heard. It is imperative" - Rachel

From "Pink Proxy" - Cancer Culture Chronicles, Nov. 7,  2011

by Rachel May Cheetham Moro (http://cancerculturenow.blogspot.com)

"...Then the news. You have a pneumothorax (partial collapsed lung) and we're taking you down to the emergency room now. Great. Here we go again. Cue the waterworks.

Pull up to emergency room desk. Me in my wheelchair sobbing. Radiology nurse clucking attentively. Emergency room desk receptionist dressed in bright pink breast cancer awareness sweatshirt and pink ribbon lanyard. Rather than taking pity on me, as I would have expected from someone who was so aware of breast cancer, and on the last day of Pinktober no less, the bitch (it's the only fitting descriptor) couldn't have cared less, and rudely waved us on to the next receptionist.

It was at this point that I stopped crying, and almost burst out laughing at the irony of the scene.  Has the color pink simply become a proxy for giving a shit? Wasn't I the point of her stupid sweatshirt? Wasn't I entitled to some special pink treatment during my special pink month? What's the point of having breast cancer if you can't jump the ER queue at least because someone's AWARE of you? Perhaps it was my fault. Maybe my chart wasn't clear enough. More the fool me for forgetting to wear my pink feather boa, bedazzled pink fedora, and Fight Like A Girl t-shirt.  End facetiousness..."

Some of My Favorite Posts by Rachel

2012, With No Apologies to 2011 (1/9/12)

Breast Cancer Awareness Jersey Shore Style! (10/1/11) 

Planet Unicorn (9/4/11)

Another Year, Another Burger (8/2/11)

Chest Pains (7/11/11)

Moving Forward. Hopefully In A Red Karmann Ghia (12/1/10)

Pink Fall (9/19/09)