KUDOS FOR KELMAN @Sloan_Kettering

Visible Ink.  Judith Kelman.  Anna Kotopoulos.  The program.  Its Founder.  My Mentor.  All life changers.

I can't do justice to the program and I am so sorry that I am not going to be at the reception this year.  The dates conflict with the AACR meeting.

The promotional video for the program which is available to all patients at Memorial Sloan Kettering Cancer Center is on my page titled "Here I Am" (look up ..... and click).   The video gives a bit of sense of how exceptional this program is to both the participants and the mentors.  The annual celebration is a Broadway worthy production.  It's worth watching just one of the videos found here as that is truly the only way to understand the amount of work that goes into staging the stories.  All written by patients.  My life is so different, and it IS because of Visible Ink.... and yes, I spoke those words, or ones very similar, in that promo video.

Judith Kelman is an exceptional woman.  She had a vision and she made it happen.  As a result, lives have been transformed.  Pieces have been picked up, dusted off, glued back together thanks to the therapeutic effect that writing can have.

I owe everything here to Judith's vision.  I don't know if I would have had the courage to hit the publish button if not for the program.  Blog?  I believe it was called "Graffiti with punctuation" in the movie Contagion.  That line makes me laugh but writing, keeping it real, being consistent?  Without the program, the encouragement of Anna, I'm quite certain, none of this would exist.  None of the relationships that have developed because of this would exist.  The well of gratitude runs deep.

Judith was presented with an award last month and it's something I want to acknowledge and share.  The Writers for Writers award was established by Poets and Writers, Inc. to recognize authors who have given generously to other authors. Judith was one of three recipients this year for founding Visible Ink.  Note: I'm not so sure I qualify in the "other authors" category, I'm more on the graffiti end of the continuum......

NY1 featured her as a NYer of the week last month.  Link is here and the piece is below.  I had a hard time with the link.....

Judith..... from the bottom of my heart.... a very public thank you for your vision, for your tireless efforts to make the program spectacular, for pairing me with Anna, for helping me find my way out of the fog.... no words are sufficient to express the depth of my gratitude.

NYer Of The Week: Judith Kelman Gives Cancer Patients An Outlet To Tell Their Stories

By: John Schiumo

Writing your life story can be a daunting task, but this week's New Yorker is helping cancer patients put pen to paper to help them deal with their treatment and discover new talents. NY1's John Schiumo filed the following report.

Judith Kelman understands the power of telling stories.

"They connect us," she says. "They're how we learn about the world. They're how we learn about our history, contemplate our future, deal with difficulty."

Thirty years ago, an idea for a book transformed her life as a mother of two into a career novelist.

"I became completely captivated by the process," she says. "I was struck by the writing bug. And when I see people who similarly are struck by that, I feel a powerful desire to encourage them."

Today, she is encouraging aspiring writers who are telling their stories of cancer as part of Visible Ink, a writing program she founded, and runs, at Memorial Sloan Kettering Cancer Center.

"What happens with a cancer diagnosis is, you're going along in life and you have one sense of what your story is and what it is going to be," she says. "And then, 'Whack.' People have described it to a train wreck. Your story is derailed. It's changed. It's rewritten."

"You have these feelings and these thoughts, and there's this need to get them out, there's this need to make sense of it," said Kathleen Emmets, a patient at Memorial Sloan Kettering. "And the easiest way for me was to write it down."

The program connects patients to professional writers, helping them to develop narratives, poems, plays and memoirs.

The writing can be personal or performed, a momentary outlet for feelings or a lasting record.

"I was afraid I was going to forget the details of what was happening to me. 'I'm sick today. I'm going to die today. I'm never going to make it. I'm going to fight this.' Whatever that story is that you tell yourself is the narrative that drives what your life is," said Michael Solomon, a patient at Memorial Sloan Kettering. "It's important you have that measure of control over what your story is."

So, for empowering cancer patients to tell their stories, Judith Kelman is our New Yorker of the Week.

For More Information

For more information, go to visibleinkmskcc.org.

HAPPY BIRTHDAY, LAUREN

Today, March 28 is Lauren Terrazzano's birthday.  Today, she should be here celebrating her birthday with her precious parents.  Today and forevermore, she is a life stolen by cancer.  Lung cancer.

A few months ago, I *met* a young woman on twitter.  She is a tireless advocate on behalf of lung cancer patients.  It's all about losing the stigma with the hope that more funding will be provided to detect, treat and stop deaths from lung cancer. We have detection for breast cancer.  We have treatments and targeted therapies for breast cancer.  We're still in the dark ages when it comes to effective treatment of metastasis.  A big part of my advocacy efforts are being directed toward raising awareness about all metastatic cancer, more equitable distribution of available funding for research of metastatic disease regardless of its origin.

Today, I'm taking a moment to honor Lauren's memory.  I feel a sense of connection with her and I mourn the fact that that she was stolen by cancer and she was stolen far too soon.  I could elucidate all of my reasons for this feeling of connectedness, but I'd rather hold it in my heart.  Instead, I want to just offer my profound and deepest sympathy to Lauren's parents.  I don't understand their pain, I can't even begin to scratch the surface but I know they are still devoted parents.  With irreparably broken hearts.

I know what her dad and mom will be doing today.  He shared it in his book.  An avid kite flyer, he has one special kite that is decorated with a picture of Lauren.  Today, that kite will soar on a beach near his home.  It will come out again in May, on the anniversary of Lauren's death.

Helicopter Frank--and Mom, too, I want you to know you are not alone in your sorrow.  Your little girl is missed by people she never knew.  She continues to make an impact.  Each time I see someone making any effort, large or small, to right a wrong, I think of Lauren.  Because of your book, I learned so much more about Lauren.  Her personality, her wit, her intelligence, her tenacity-- it shines through her final columns in NY Newsday.  Life, with Cancer had an impact on many and those columns are as relevant today as they were in 2006 and 2007 when they were written.

Lauren was not her cancer and the book stands as the ultimate testament to all of her brilliance, all of her goodness, all of her no holds barred take charge personality.  Wherever she was present, lives were touched.  When she bared her soul in Life, with Cancer, her voice was amplified and immediately, she became the confidante and friend of many.   I am certain, like me, so many were reading Lauren's words, feeling like she was speaking only to them, nodding in agreement at every other line.  That is a gift.  She shared her gift with the world, she put it all out there and I want to offer a gift in return.

Uniting Against Lung Cancer will be holding it's 7th annual Kites for a Cure on Long Island on May 25th.  I know I shared this already but we had a kite flown in my dad's honor at their inaugural event.  If you dig deeply into this blog, you will find a rather long and rambling blog post about Kites FOR A CURE.  I was deeply irritated when I read about how long and hard they were forced to fight a legal battle over the name.  The breast cancer rebels understand.

What started as one small gathering on a beach on Long Island has exploded as a wonderful fundraiser.  There are events in many different cities.  I have decided to have a kite flown in this year's event.   I think I will ask them to decorate it with the words #FearlessFriends and #NoStigma.  It is for Lauren and it is for my dad.  All three of us were patients at MSKCC at the same time in 2006 and 2007.  Lauren was gone in May.  My dad in July of complications stemming from a lung cancer diagnosis.  In late 2006 through mid 2007, we were three patients in active treatment.  I'm here.  They aren't.

If anyone wishes to offer financial support for lung cancer research, I'm embedding a link which makes it very easy.  Since UALC is a 501c3 charity, donations are tax deductible through a website called Razoo.  Of course, donations can be made directly to UALC by clicking here.  The fundraiser page is called:

#NoStigma among #FearlessFriends

If you have the means and are so inclined, I hope you will consider joining me in support of the lung cancer community.  In memory of Lauren, in memory of my dad, in honor of my mom and of all metastatic patients, and most of all, on behalf of those with lung cancer, I stand beside you.

   

A big thank you to Lauren's dad for sharing the photo of the very special kite soaring among the clouds on a beach in Massachusetts.  I'm humbled by his kindness in sharing this with me.

DONNA PEACH, DANCES WITH PENS

I can't even write.  I don't know where I would begin.  Yesterday, Donna Peach was stolen by this wretched disease.  A beautiful voice silenced.  I knew her health was deteriorating but she always rallied back.  This time, it didn't happen.

Her husband, Marvin had been updating her blog when he could and yesterday, he shared everything that happened in those last hours.  His words are eloquent, heartfelt and beautiful.  If you wish to read what he had to say or leave a message for him, Donna's blog can be found here.

For my part, I can only say that Donna was special.  Gentle.  Wise.  Donna was a woman filled with grace.  Yes, if I had to choose just one word, it would be Grace:  graceful, gracious.

She will be missed by many.  I'm certain many of the bloggers will have plenty to say about Donna and I will post all of the links I find in this post.

As for me.... I will MISS you, Donna.  I know we would have had great times visiting if we lived closer.  "Just a half an hour and a cup of tea" .....

I'm saddened.  Really, I'm heartbroken.


Beautiful words from my very dear friend, Lori who rallies to my side EVERY.SINGLE.TIME. managed to arrange a "tweet up" ... a real life meeting of a group of twitter buddies....  What a beautiful tribute she has written.

THE ONE ABOUT GATES, INDIA, CONDOMS

I'm going with:  It's Me.  I lost the memo on "why I should not be outraged" about those studies in India that I blogged about on February 25th.

For quick review, simple bullet points:

• There are two studies being conducted on women in India.  They are ongoing.
• One was funded by the NCI (National Cancer Institute).
• One was funded by the Gates Foundation. (Bill, Melinda, Microsoft)
• The tests are about cervical cancer, highly detectable, highly treatable, highly curable.
• In fact, in THIS country, cervical cancer is treated with such non-chalance, we tried to lose the word cancer unless it gets REALLY BAD.  In other words, a cancer success story.  Want proof? Here was my take on the NY Times article. (FYI-This is the second time I've posted that link in a very short time.)
• Between those two studies, funded by US dollars, almost a quarter of a million poverty stricken women in India SHOWED UP.
• They showed up to participate in research studies.  I'm pretty sure that would indicate they wanted some sort of treatment.  That's my unscientific observation.
• The endpoint of the studies:  Death.  
• They've only reported outcomes through some time in 2009.  Three plus years between these reported outcomes have passed.
• As of 2009.....  NCI study-15 women died; Gates study-64 women died.  How many more are dead today?
• The ethics of the study have been questioned.  When the "control arm" is death more than the ethics should be examined.  Really, the brains of everyone involved in approving the funding of this sort of research should be questioned.  
• The issue of "informed consent" is murky.  When one affixes a thumbprint on a consent form, if a question arises, how will the woman read the consent form?  Quite simply, she can't and she won't.  
• PLUS, the informed consent form that was submitted with the grant application had information about PAP screening.  Somehow, the consent form that got shipped to India?  Omitted.  In error. As IF it would have made a difference anyway.  See prior point re: reading.
• I'm sure I'm missing many more things that have made me completely IRATE over this but NONE and I do mean NONE has angered me more than the nonchalance with which this has been handled.  The story is still NOWHERE.  And I mean NOWHERE.  The only place it can be found is in AZCentral.com where Bob Ortega did a superb job of digging for information.

I'm feeling a bit like Erin Brockovich except no one is hiding anything.  It's all there for the public to read.  The trials are listed on clinicaltrials.gov website and they are both following standard study protocols.  I have spoken to someone who is going to see about getting this information into the media pipeline.

Last week, I saw this on twitter.....  and it reinforced my determination....

AnneMarie Ciccarella @chemobrainfog has posted about it here chemo-brain.blogspot.co.il/2013/02/why-ha…
— Zen(@zenmotherhood) March 20, 2013

I didn't see that tweet for two days. I was thankful I wasn't shouting into blank air. And I made sure I let "Zen Motherhood" who lives in Mumbai know that I would not drop this until it was given proper attention.

@chemobrainfog thank you.
— Zen(@zenmotherhood) March 22, 2013

Today is the day to engage my big mouth. What's with the silence? My jaded mind tells me it's not right to mess with revered names like Gates, Bill, Melinda. My jaded mind tells me that's the issue. I am not calling the integrity of the entire foundation into question. I'm asking about one study and it's completely ignored.  On National Women's Day, I sent plenty of tweets and included Gates Foundation in those tweets.  Melinda Gates sent a tweet and I replied in a way that everyone who follows her would see my question.  I wanted to know who is watching over the women in India.

Apparently, Mrs. Gates is watching some of the women in India.  Despite the tagline on her twitter background, which says All Lives Have Equal Value, why didn't she stop in on the clinic where some lives were expendable, at the hands of research funded by a foundation that she co-chairs and bears her name.  Sorry.  I am calling this one like I see it.  She's a woman, this is disingenuous and no one is saying anything.  No questions asked.  No explanations offered.

Here was the feel good story posted on February 28th on the foundation's blog, Impatient Optimists. "Empowering Women and Girls Through Access to Contraceptives" .  Like I said, disingenuous.  All Lives Have Equal Value and in the same country where women were used as lab rats, and died, the photo op is about family planning??  I'm fairly sure someone at the Foundation must watch the media and Bob Ortega's expose was already published.  My original blog, for whatever THAT is worth, was also already published.  The visit was three days later.  

In light of what DID make all the news stories yesterday, I might be inclined to laugh at the irony but I can't laugh when the lives of women were deliberately sacrificed.  Yes, DELIBERATELY.

What was all abuzz yesterday?  On that very same blog:  Reinventing the Condom.  The gig?  The Gates Foundation will be awarding a grant in the amount of 100K to the person whose idea seems most feasible.  Who can build the best condom?  Of course, that story hit every major news feed, many of the online magazines and I stopped looking when Google returned 873,000 results in 0.26 seconds.  On condoms.  On those women, only Bob Ortega and a couple of blogs.

By AnneMarie Ciccarella






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"MY PARENT HAS CANCER AND IT **REALLY** SUCKS"

It's a true statement.  I'm a grown woman and I can make that statement as easily as the teen who wrote the book. Literally.

As a mom, I do everything I can to shield my kids from harm.  (I'm guessing my mom passed THAT gene to me.)  I can still hear my mom's voice.  Circa July, 2006.  We were in the exam room waiting for the doctor.  The nurse mistakenly said something thinking the doctor already called me.  She thought I knew.  I didn't.  My mom's words, "I wish there were a way for me to do this for you."

I was an adult.  I had a daughter in college, away at college, far enough away that flying was the required method of transportation.  Although she was insulated from much of the day to day living in Cancerland, I know it was on her mind and from recent comments, I know it's still on her mind.  My niece is in her teens.  She went on emotional overload when she learned that my mom is being treated for cancer again.  I don't know what is running through her head.  Is she remembering the amount of time it took for my sister, her mom, to recover from surgery?  Is she afraid for her grandmother?  Her mom?  Herself??

Cancer takes its toll on everyone.  As the gap between now and the days of active treatment widens, I can look through the cancer prism using the eyes of my loved ones.  Their need for support, sometimes minimized, often unmet can not be overstated.  When I was first diagnosed, one of my friends came for a visit armed with books.  One of them was for my husband.  It's still on a small bookcase behind his desk.  Written by Marc Silver, Breast Cancer Husband provides stellar, solid suggestions for the spouses.

Recently, Marc co-authored a book with one of his daughters.  Maya and Marc have given me a peek into the challenges that I did not have to face.  Parenting a teen, OR being a teen can be difficult enough--add in a mom with breast cancer and ......  well, I'll let Marc and Maya speak for themselves.

I've turned over today's blog so they can give us all a little glimpse into what their lives were like when Breast Cancer turned their home into CancerLand.  And then, some suggestions to perhaps prevent the picture Maya paints when she says the family "put our heads down......until it was over ...... (so) we could all come up for air."

My Parent Has Cancer: Now Keep Talking!

Marc: My daughter Maya is on the sofa watching TV. I’m about to run out into the cold February night to pick up some ginger candies for my wife, Marsha, who’s feeling a bit unsettled after her chemotherapy treatment a few days before.

“Heading out to get something for mom, be right back,” I call to my 15-year-old daughter.

“How is she doing?” asks Maya. 

In my head I think: “But you could ask her yourself because mom is upstairs in the very same house in which you are watching TV!” But I bite my tongue because I don’t want to rag on Maya.

Maya: I may as well have handed my dad a postcard, reading, "Hey Mom! How have you been? Wish you were here (on the couch)!" and asked him to deliver it to her bedroom upstairs, where I didn't really want to go. I am ashamed to admit that I really didn't like being in my mom's presence when she was that sick.  

When my mom was going through treatment for breast cancer, communication in our family did have its weaker moments. We didn't all talk as a family very often. I didn't know that my dad was struggling. He never asked how Daniela (my sister) or I were doing. More or less, we all put our heads down and scraped our feet through the experience until it was over and we could all come up for air. 

Marc: Now that my daughter and I have written My Parent Has Cancer and It Really Sucks, a book on teens facing a parent’s cancer, we’ve learned that there are a lot of ways to keep up, depending on the family’s style.

1.       The family meeting. Maybe you have a tradition of family meetings already. Then add a section or an extra meeting called “putting cancer in its place,” suggests psychiatrist Karen Weihs, Medical Director for Supportive Care at the University of Arizona Cancer Center in Tucson. Here’s what’s up with the cancer treatment – and what’s up with you? Any questions? Anything you’d like to share?

2.       The car. If you are the designated driver to get your teen to school or the mall or a friend’s house, use the car as a vehicle for communication as well. No need to look each other in the eyes. Just talk about what’s up with cancer – and also what’s up in the world of teenagers. Your kids may still want to talk to you about the latest boyfriend/girlfriend scandal at school – and it’s great to talk about things other than cancer during this period. In Planet Teenager, life does go on.

3.       The journal. Keep a notebook in a conspicuous place. Mom and/or dad, write down the latest cancer developments. Encourage the kids to write their questions as well. And then you can answer the questions.

4.       The post-it note. Maybe your teen is a minimalist. A post-it note in a prominent place – the bathroom mirror, the fridge – can help keep the conversation going. It might be as simple as: “Dad has chemo today, home around 6 p.m., can you order pizza for dinner?”

5.       Respect your teen’s communication style. Not every teen is a talker. If your kid isn’t up for a conversation, don’t force it. On the other hand, don’t assume that the lack of conversation means you don’t need to keep the family up-to-date on cancer bulletins. The mental health experts we interviewed suggest telling your kids, in a straightforward way, what’s going on with the treatment. And then follow up the next day or so: Did we give you too much info? Was it helpful? Is there anything more you want to know?

You can read a bit about Mark and Maya on their website.  Mom and wife, Marsha was diagnosed with triple negative breast cancer in 2001.  Tumors were found in both of her breasts.  Today, she is in good health.  

THE COAST IS CLEAR -- TIME FOR BOLD MOVES

We can cut through the unspoken.  The fear that was the elephant in the room.....  the elevated liver enzymes are NOT a progression.  The PET scan results are in...  The bone seems to be "less active" and there is nothing on my mom's liver.

HUGE SIGH OF RELIEF.

I was on the phone with the oh so spectacular Kwanele from South Africa to share this good news and to figure out what we should do in order to shake things up GLOBALLY.  She's had her own fair share of medical limboland nonsense...... which sidetracked us from global strategizing for a brief moment.  It prompted us to add another phrase to that list of "goes with the territory" and if I hear it again I might be inclined to go to a very ugly place.

It's the sentence, when spoken by a clinician, that begins as follows:

"With YOUR History, ______________  "

Fill in the blank.  I know you get it.  I see you all nodding your heads in agreement.  CJ told me that it's not unusual for some sort of medical issue to pop up every so often.  It will never get easy, but I will follow CJ's lead and Lori's lead ...... and learn to navigate these strange and choppy waters.

Now that this is on the shelf, I can focus on some very important events that I'm excited to share.  In a few weeks, I will be attending the American Association of Cancer Research (AACR) Annual Meeting.  I was invited to participate in the survivor <---> scientist program.  This meeting draws a crowd of about 17 THOUSAND people.  There will be plenty of opportunities to connect with people who are passionate about research.  It's a bit serendipitous that the new physician in chief at MSKCC, Dr. Jose Baselga is the Program Committee Chairperson for the meeting this year.  That pretty much puts him at the top of the food chain at the meeting AND at MSKCC.

The only problem?  I have to do a poster presentation.  I selected the topic, I know where I'm going with it but the actual artsy layout.... Let's just say I'll write anything but I don't have a creative bone in my body.  I see these wonderful infographics and even the word bubbles and am fascinated by the use of the colors and the lines and the arrows and ..... My topic is already published in the program so I suppose it's okay to share.  I will be explaining how social media impacts the effectiveness of patient advocacy.  Despite the lack of words at my mom's party, I have no problem talking about any and all aspects of this.  Unfortunately, I can't speak before an empty seven foot board!  While others be jittery over the speaking to people part, I'm all about the appearance of that board, my back drop.  I hope I can do justice to the work of the bloggers and the twitterverse.

While I'm in Washington, DC, there is going to be a Rally in support of research.  There is a crisis and we are at a crossroads.  Tremendous potential for meaningful progress seems to be on the cusp of reality.  Finally.  I can't sit on the sidelines and watch.  Doing nothing feels selfish.  I seem to be saying that lots these days.  The AACR Meeting rearranged the sessions so those who wish, may participate in the rally.  Thanks to social media, everyone can participate by sending a message about the importance of science and research.

And then, there is the Supreme Court.......  oral arguments against Myriad labs are being presented on April 15th.  Breast Cancer Action is one of several plaintiffs in that lawsuit.  Myriad has made enough money.  Their stronghold is affecting research.  Enough already.  The damn patent is expiring in 2015 but this needs to be decided once and for all so that it can't happen in the future.  That's all about BRCA genes and testing for those mutations and I'm jumping into that fray, too. I'll share more when I know more.

The buzzword is COLLABORATION.  Anyone that stands in the way of working together toward a common goal must be pushed aside or climbed over.  Get on board or get left behind.

BELATED THANKS @ScarvesDotNet & @givoly

The thanks are overdue because I've been overextended.

First and foremost, a big thank you to the gang at Scarves Dot Net (SDN).  Their online store is filled with tons of beautiful scarves and I've become a scarf lover.  I've learned that just a few cotton T shirts in some fairly basic colors can easily morph into a sizable wardrobe with the addition of some colorful scarves.  I've also learned how to transform a basic black dress with a neckline just a tad too low to be suitable for business.  A scarf and a black jacket by day transforms into quite the little black dress with a great pair of smokin' hot shoes for that day to night thing everyone always talked about and I could never quite grasp!

SDN recently launched Knots for Hope in a separate area of their website.  It's filled with links to many terrific resources: books, websites offering practical support, blogs (including this one which is quite humbling and for which I am most grateful), videos on how to tie a headscarf and a section where they have interviewed a number of of people for their SDN Spotlight.  I am honored to be their sixth interviewee and even more honored to have my interview coincide with the official launch of Knots for Hope.  I'm thrilled to be in the company of Ann (But Doctor I Hate Pink) Silberman,
Nancy('s Point) Stordahl, Angelo (The Battle We Didn't Choose) Merendino, Barbara (Let Life Happen) Jacoby, and Jacki (My Breast Cancer Blog) Donaldson.

I feel a bit out of my league..... thank you AGAIN, SDN and I hope you will read some of the interviews.  It's always validating to see my story in a different venue and I am always especially impressed with any site that is able to round up so many resources and put them all in one place.  Knots for Hope is well done, indeed!


Thanks, Part Two
is for Tal Givoly.  I was in NYC last week and as it turns out, so was Tal.  We barely had half an hour for a quick cup of coffee.  Tal is the CEO of Medivizor and he shares his passion for this start-up on his blog.  Shift your eyes to the right, click the link if you want to join (which I highly recommend).  If you want to read more about the company, (this would be Thank You, Part Three) e-patient Dave wrote about Medivizor and he mentioned this blog.  He has some serious street cred so I'm quite thankful that he felt my write up about Medivizor was worthy of a link in his piece.

Back to Tal.  I wasn't quite finished with that thank you.  Although I quite possibly did NOT thank him for the latte, I was floored when I sat at the table and he reached down to put a basket of flowers in front of me.  "These are for your mom." She hasn't stopped talking about the beautiful yellow roses in the basket.  You see, when my youngest sister was born, mom was in the hospital on Mother's Day.  I remember my dad bringing the rest of us (that would be her four OTHER kids) to wave to her from the street.  I was ten, little kids were forbidden from setting foot inside a hospital and having a baby required a minimum three night stay.  And my dad brought her two dozen yellow roses.....  the basket meant more than Tal could have known when he selected it.

She's probably going to have tears streaming when she reads this, but I know she took one of those yellow roses to my dad's grave the day after her party.  So, Tal.... thank you from me... and thank you most of all, from mom.

More thanks are on the way but I don't want anyone's thank you to get lost so I've imposed a two (plus one) thank you limit per post ......  I've been distracted and we all know why.

Scans are done.  Expect the doctor will be calling today to discuss if anything will be adjusted on the medication front. Keep the good thoughts flowing.  The waiting will never be easy and the waiting will always SUCK.  And suddenly, I am thrown back almost seven years ago when I stepped on to this runaway train.  The very excellent MSKCC radiologist who told me to be my own advocate dispensed a second pearl of wisdom in that same moment.  "There's lots of waiting in all of this and the waiting is pretty awful."  The things I didn't understand, the things I couldn't possibly understand until I was on the path myself...... now?  Crystal Clear.  Absolutely Accurate.  On Every Count.....

THE NEEDLE AND THE DAMAGE DONE, PART 2

It's been an entire year since I wrote this post.  The title is the same as it appeared on March 20, 2012.  Six years ago today, I officially broke up with chemotherapy.  The needle was yanked, the damage was done and I officially exited the building.

Today, my mom is walking into that very same building for her first set of scans since being diagnosed with metastatic disease.  The irony is almost cruel.  Actually, her diagnosis IS cruel.

When I read my words from precisely one year ago, I can see so much has changed.  My question, "Is this the true Five Year Marker?" is now a question, that if asked to me, will quite possibly be met with the iciest glare I can possibly muster. While I'm on a rant, don't talk to me about early detection either.  As I read another part of this entry, I am reminded of my first comment.... the first commenter who commented a second time and then again, and is now my friend. Barb.
Barb Bristow.  She's metastatic, too.  She was blissfully ignorant a year ago.  It was our way of joking about chemobrain. Today?  I'm guessing we are both acutely aware.

I was getting ready to go see Pink Ribbons Inc.  I was anxious to meet whomever would be speaking on behalf of Breast Cancer Action at the movie.  Little did I know it would be me.  Fast forward to today.  Breast Cancer Action is one of the plaintiffs in the case against Myriad Labs that will be heard by the Supreme Court in just a few weeks.  April 15th.  I'm prepared to speak out in support of BCA's position on gene patents.  Anyone or any organization that stands in the way of research is going down.  Or, I'm going to be bruised and bloody in my efforts.  I've had enough.

I saw Luana for the very first time as she accepted an award at from the Avon Foundation to help fund her passion, You Can Thrive.  I am still anchored but some of the beaches I've been thrown upon?  Washington DC and the advocacy summit where I met Lori and CJ and learned how to be a fearless friend.  Washington DC where I also met Kwanele and found a sister in South Africa who is a global activist and a fierce advocate.  Acceptance as a DoD consumer reviewer, the Faster Cures conference in NYC, San Antonio where I met so many people and have gotten support from every corner of the globe.  In a couple of weeks, I will be at the American Association for Cancer Research Annual Meeting.  I'm in the midst of preparing a poster presentation for the meeting.  I'm repeating things that everyone has already heard a zillion times or more.

Today...... it's about mom.  The needle and the damage done....  And my own scanxiety.... and everything else that goes along with what has changed in one year.  There is much talk of disruptive innovation.  I'm being disruptive.  Righteous anger at the lack of progress......  Noise......  I'll be doing it all.  Because that's what daughter's do.  At least that's what THIS daughter does......

Here's the replay

March 20, 2012, One Year Ago Today......


Today is a day of BIG reflection.  Five years ago, precisely FIVE YEARS AGO, those machines were turned off for the last time and the needle was yanked from my arm, the last of the poison having dripped into my veins.. let's hope, FOREVER. There was no celebration, no confetti falling, no balloons soaring toward the sky.  It was quiet congratulations from the nurses.  It was a big hug from my oncologist and it was a ride to an empty home in the back seat of a car driven by a stranger.  Somehow, I expected more.

Even though I knew I still had additional surgeries, the worst of it was behind me.  The word chemobrain was not even part of my vocabulary.  I kid you not.  The word didn't exist.  Yet.  And now?  It's become the springboard for everything.

Today is the Fifth Anniversary of The Day I Broke Up With Chemotherapy (and is THIS the TRUE "five year marker?"). Another noteworthy event?  Today, exactly eight months ago (plus one day), I hit the publish button.  I suppose I can now say I am a blogger?  I've been at this consistently for eight months.  I began to write "my silly little blog" and it went live in the final moments of July 19.  Before the month was over, I saw a comment.  What a thrill.  I love reading comments, but that first comment.....I remember jumping around joyfully.  Seeing the number of readers climb a bit higher--also very thrilling.  And then, to see countries and one day realize, "Hey, the blog has been read on every continent except Antarctica," definitely another rush.

I just recently shared the story of this blog with some of the people who staff the volunteer program that sent me the angel who helped keep me focused.  I explained how the blog has turned into the force that guides me.  The blog took on a life of its own.  My fingers hit the keys and my body is along for the ride.  Sometimes with my brain.  Other times, not so much. One of the people I was with asked if I saw the movie, Julie and Julia.  I had no less than four people tell me I HAD to watch the movie when they heard I was writing and thinking about designing a blog.... I think I watched it in preparation for the NEXT person.  I didn't want to keep saying, "No..."  As I watched it, the only thing I could relate to?  The first comment.  From her mother.  Telling her to give it up.  Except in my case, my mom hasn't ever told me to give it up. She's encouraged me.  The movie mom comment?  Definitely funnier.  The success of her blog?  A Meryl Streep Movie???? Dream on, AM..... All similarities end at the word "blog."

At this point, I'm waiting for someone to catch on, for someone to call me on my shit, so to speak, someone to finally realize: I'm not REALLY a blogger, I'm just someone who set out on an adventure.  Not altogether that adventurous either because this adventure is from the comfort and safety of my home.... I'm waiting for someone to say, "What the hell are you doing? WHO CARES about your insurance problems or your need to embarrass your kids by aging backwards or how you feel about skewed statistics or anything ELSE for that matter???"  

Low expectations.  Me?  I had NO expectations.  Mostly, I began writing to amuse myself.  I crack myself up even though it's often pointed out my jokes are not funny.  I never thought more than a handful of others might find this (me) entertaining.  And a handful became lots and thank you wherever you are for reading.  Many doors have opened because of the blog.  Not get rich and famous doors, just doors.  And on the other side of every door is a new experience.

I hear the voice of a tall, dark stranger whispering, "It's all part of a great journey."  The tall, dark stranger is actually my best buddy but hey, I like to let my mind wander.  Tall Dark Stranger just sounds far more intriguing, don't you think?  I'm having a grand old time.  I love that this blog was the conduit that opened up the world of advocacy and activism.  I love that a VOLUNTEER helped me get going here, and by here, I mean in the blogosphere.  Having Anna Kotopoulos share her many talents with me and share them from her heart was my pay it forward catalyst.

Stepping into the world of volunteerism is the most rewarding thing I have ever done IN MY LIFE.  In the short time that I have been actively volunteering, cliche though it sounds, I have gotten so much more, exponentially more, than I have given.  I am still all over the place.  I am fine tuning my path on this great journey, a journey upon which I remain thanks in large part to the encouragement of that tall, dark stranger.  OK, O K A Y... my buddy....

Tomorrow?  Who knows.  I only learned to Be AWARE..... fully present and aware.  As the upcoming weeks unfold I will cross over the threshold of several different doorways.  Somehow, I have things happening in every direction.  I am thrilled that ASCO Post published my "story" in their March 15th edition.  Tomorrow, I will be staffing a table for Army of Women table at the opening night reception for the Avon Foundation Breast Cancer Forum.  I will be at the plenary session the following afternoon to hear Dr. Susan Love.  Later that evening, I am attending a lecture presentation at MSK.  The week after, I will get to see Pink Ribbons, Inc. and will meet whomever will be speaking for Breast Cancer Action at the screening.

Still waters run deep and that's a part of who I am.  Anchored.  But the waves?  Those waves are A Thrill.  And, there are new waves on the horizon and I'm hopping on.  Every. Single. Wave.  Until I am tossed on to the beach, that ONE special beach....My beach.  The beach where I belong.  I'll know it when it happens.  Of that, I am certain.

(AND A BIG OLD PS.... TO SAY THAT I TOTALLY STOLE THE TITLE OF THIS ENTRY FROM A TWITTER PAL.  WE APPARENTLY ENJOY SOME OF THE SAME MUSIC.)

GENEROSITY FOR JENNIE

I have wanted to share this story for the past two weeks.  I've been so distracted by "stuff" that it remained on the back burner.  Stuff would include Sunday's surprise party and thank you ALL for the notes you left on yesterday's blog.  Mom sends love to all and said she should have removed her coat.  I should have put down my bag.  No matter.... as long as I can see the red shoes on my feet, it reminds me of The Wizard of Oz and the goodness of people.

Scanxiety will be in full swing today.  Tomorrow is mom's first follow up scan.  Projecting and anticipating?  Trying not to go there.  I'm still basking in the glow of a wonderful day and a beautiful party.  And in the theme of warm and fuzzy, I turn to Jennie Grimes and the support network that surrounds her.  Jennie is a young Stage IV patient who recently began working for the Dr. Susan Love Research Foundation.

In December, there was an issue with her car.  Jennie is constantly sending ripples of good karma into the universe. Within moments of posting her frustration over the car on her Facebook page, friends jumped into action.  They set up a fundly page to see if they might get enough contributions to put the keys to a reliable replacement in her hands.  The page exploded with donations within hours of being posted.  Jennie needs the car to transport her for her medical treatment.  It's not a luxury. It's a lifeline.

A couple of weeks ago, I noticed that Jennie was too quiet.  I spotted a picture on Facebook.  Clearly, she was in the hospital with that smile that lights up the universe surrounded by loved ones, all in hospital gear.  Not the full hazmat gear, but just gowned up.  I had no clue what was happening.

Obviously, it was not planned treatment protocol which was pretty easy to figure out when I saw her friend post this on Facebook:

"My friend Jennie's recent unexpected week-long hospital stay cost several thousand of dollars. These costs rack up shockingly quick! To help her pay off this debt, her friends are raising money on her behalf. We want her strong and that includes not losing precious sleep over mountains of medical bills. So please make a donation if you're of a mind. No donation is too small (or too large)!"

That was on March 5th.  The following day, the same friend, Joanna posted the following note to Jennie:

"An extraordinarily sweet and generous friend of mine would like to pay the cost of your meds for the month of April. This year he has committed to do one thing for someone in need each month, and do without one or more things for himself in an equivalent amount that month. Can you tell us all what it costs you out of pocket each month for the meds that keep you alive? And maybe some kind donor would like to take the month of May (and so on)? It is utterly ridiculous that life-saving, necessary drugs are unaffordable for so many in this country. For those who can afford it, what a great, tangible way to pay it forward."

I asked Jennie if she would let me share this story on this blog.  There is nothing more heartwarming than people touching other people.  The extraordinarily sweet and generous friend has not been named. He just stepped in, because he could. With little fanfare.  No expectation of accolades.

I was so taken back when I saw this message, I was damn near tears.  Here's the thing.  We all do what we can.  Whether you are able to reach into your pocket or lend a helping hand or just offer the gift of a smile to someone who seems like they need it, know it makes a difference.

Make a difference today.  I promise, there is no better feeling on the planet.  Make an authentic connection.

Words to live by......  painted on the wall of a trendy Restoration Hardware store in lower Manhattan... They fit and of course, seeing the word "fearlessly" forced me to stop and read the whole quote:

“When we fearlessly fight for what we believe in and remain hopelessly optimistic about life, love and the future, we create an authentic connection with all in our path. Most importantly with ourself.”

HAPPY BIRTHDAY MOM, I LOVE YOU.

It's been a rather difficult few weeks.... mostly, trying to keep a secret.

Yesterday, we had surprise party for my mom.  Her birthday was on March 3rd.  We were together to celebrate but yesterday, I think I can safely say she was shocked when my son walked her into Sunday brunch.  What she thought was lunch for six was a party with one hundred guests.

It's my sister.... she's the one who is not happy unless and until it's quite an extravaganza and she did an excellent job of tending to every single detail.... 

There are five of us.  I'm the oldest.  Somehow all of us were in front of a microphone.  My kids gave me strict instructions.  Keep it short.  I spoke last.  Put a microphone in front of me and I have nothing to say?????  

Yup... that was me... in front of a room filled with family and friends.  I think I said I wasn't prepared to speak.  I recall saying, "I just want you to know that I have your back..... I love you."

Today, all I have to say is Happy Birthday.....  And then, something you can never say enough:  I love you....

METS MATTERS MOST

MMM.

In a past life, those three little letters were an acronym for three **other** words but that's a secret between two people. I'm one of the people.  Good luck finding the other.  Or getting me to share the secret.

Today, they mean what they mean.  Metastases Matter Most.  It's not just breast cancer.  It's ALL cancers.  Science has come far.  Just like I believe any advances that further our understanding of the human brain will translate across to many different diseases, cracking the code of the molecular, cellular, nano particle or whatever else these very brilliant researchers have on those slides is going to transcend any one cancer.

On Tuesday evening, I was pretty wow'd by the caliber of the conversation that took place on a stage in an auditorium at Rockefeller Research Lab on the campus of Memorial Sloan Kettering Cancer Center. The webcast won't be available on the MSK site for another six to eight weeks but it will be worth the wait.

What impressed me most?  Much of the talk was devoted to the treatment of metastatic disease.  I don't know where else the voices of the mets patients are being heard but I know they are front and center in the minds of the doctor researchers who were on the stage.

A few of my favorite lines (bearing in mind they are paraphrased since I am not a stenographer):

• The ultimate goal is to see that everyone is free from fear in ten years time.
• We need to shift our focus to study metastatic disease.
• We've been studying the cows in the barn to see why they stayed instead of looking at the cows that left.
• We need to collect metastatic tissue.  
• The human factor is of tremendous importance.  (It's not only about the slides and the computers, it's about the connection between doctor and patient.)
• It's all about being informed and making informed decisions.

The problem lies in research funding.  Larry Norton closed the presentation with a political observation.  We need to be screaming and shouting at our leaders in Washington.  Science is on the edge of greatness and it can and will be halted if this mess in DC doesn't get addressed.  And FAST.  I suppose Dr. Norton has heard his fair share of looking to the private sector.  He said that we can't count on corporations to just hand over money.  They aren't in the business of funding research.  They are in the business of selling products.  Tru Dat is how that goes if I have my street lingo down.

We are back to grass roots fund raising and the philanthropically minded and to that end, I was immeasurably impressed by something that was shared by Dr. Norton.  The Breast Cancer Research Foundation does what their name implies.  They fund research.  There is a stellar scientific advisory board and then, there is Mr. Leonard Lauder.  More about him in a moment.

A Founders Fund was established to honor the memory of Evelyn Lauder who died of ovarian cancer in 2011.  The first grant from that fund was awarded in November.  It is an eight million dollar grant for an international multi-institutional study to be carried out over the next two to three years.  In addition to the eight million dollar grant, Mr. Lauder appointed Sotheby's to auction several pieces of jewelry, with the expected 13M proceeds to be infused into that grant.  In one day, at one auction an additional 19M dollars was raised.  The vision of the work will address how to "thwart breast cancer mortality."  Those words are MUSIC to my ears.  Save Lives First.

Building on the foundation of the Cancer Genome Atlas, the research holds unprecedented promise to change the cancer landscape. For ALL cancers.  I will be watching this with great interest (and in exactly one month, I'll be watching the Supreme Court with equal interest....).  My advocacy community extends far beyond breast cancer.  I have friends whose strong voices must be heard as they push with such tenacity for better treatment seeking that huge jump in survival of lung cancer, brain tumors, rare cancers just to touch on a few.

The problem?  Not every researcher has access to someone like Mr. Lauder.  The cuts that have already taken place in Washington DC are going to completely crash the funding of all sorts of research.  Have you spoken out?  I've been shouting since November.  And I'll be shouting again in April.  I will be at the annual AACR meeting.  (More on that in the days ahead, I'll be seeking suggestions for a little project!)   AACR adjusted the meeting to incorporate this rally into the program.  THAT is how important it is to send a message that we expect our representatives to knock off the childish nonsense  and get back to the jobs they were chosen to do.  By us.  I know the folks from Research America and Faster Cures will be in that crowd.  I'm sure there will be plenty of others, too.

ONE voice, for the benefit of all.

Lots more in the days ahead.... about AACR, about gene ownership, about the kindness of Tal (who? The CEO of Medivizor), about an interview posted on Scarves Dot Net, about scanxiety, chemoversaries and whatever else is swirling in my head.

For now, I'm shutting down for the weekend.  It's social media hiatus.  My 48 hours of self imposed, FORCED disconnectivity.  Happy Friday.

Oh yes.. and what I'm sure will be repeated over and over and OVER.. Beware the Ides of March and all that jazz, too....

THE WAIT ... OR THE WEIGHT ???

I was officially diagnosed with breast cancer in July of 2006.  A quick primer on that whole patience being a virtue thing led me to realize one thing.  Apparently, I'm not the virtuous type.  May be worth my time to check some of the other traits on that virtue list to see exactly where I DO fall on the virtue continuum.  Patience, definitely not my strong point.  Waiting.  I don't have to go there.  We all know how very much that sucks.

Right now, my mom is waiting.  Her first scan is next week.  Routine.  As if any scan is EVER routine but the point, it's not an "Oh My God, something is definitely wrong and we need to get you into a tube asap scan."  Instead, it's a pre-planned, "We are going to see if this treatment is working scan."  Because the oncologist sounded an alarm the other day about elevated liver enzymes, I'm pretty sure he would be doing a lousy doctor job if he doesn't throw a CT of her liver into the same scan.  Doesn't change any of the testing protocol.

There's nothing to talk about with the liver enzymes unless there's something to talk about and since we already know my mom has a "fatty liver" I jumped into action last night.  The medication she is taking is metabolized through the liver and CAN create issues in some people, specifically those who have even mildly impaired liver function.  Several months back, those enzymes were out of whack and resulted in hepatitis tests.  Negative. A. B. and C.  If the medication is elevating the enzymes, according to my buddy, Dr. Google, the dose can be halved.  I'm not worried.  I know her liver story.  I Just Hate Waiting.

In 2006, I waited from April when I had my first inkling something was wrong until October when I found myself in the chemo suite which is when I feel like I was finally doing something to address the cancer.  That's a long time and that's a whole lotta internet.  I need to know.  Everything.  Now.

Way back in 2006, I found things like the Sister Study which was still unfilled until the Army of Women sent out an e-blast and viola!  The study was filled rather quickly.  And really, where are all the women?  Still in the 370K range??  Seriously. What is UP with that?

I found Lillie Shockney when I was so damn confused by the fact that there were two separate and distinct things happening in one breast.  I couldn't wrap my brain around the fact that what was happening in one quadrant had nothing to do with what was happening in another quadrant.  I hadn't gotten my diagnosis yet.  I just had lots of letters on a pathology report.  ADH, LCIS, ALH, high grade, low grade... and Lillie was running a Q&A site for Hopkins.  I sent her a question.  I felt all high and freakin' mighty when she replied.  Most people were being talked off the ledge.  Me?  The response went along the lines of "if you are able to make it to Hopkins, we have excellent doctors to sort this out."

I covered the research aspect, located the clinicians who are at the top of their game.  And I found Laura.  She was a blogger when blogging wasn't an explosion in social media.  A trailblazer.  An excellent writer.  Witty.  Sarcastic. Engaging. And she had breast cancer.  And, there were "brants" on her blog.  Brag and a Rant.  If I recall, there were a series of posts that the brants were switched up to breast cancer rants.  I decided, for the life of me I don't recall why, to reply with a brant of my own.  I have no clue if I was moaning about drains or complaining about tissue expanders, I only recall that Laura replied.  I needed that connection.

When I began blogging, I remembered that blog, I remembered her name and of course, I remembered the kindness of a stranger.  Validating my feelings.  Laura is an accomplished writer.  Google her name:  Laura Zigman.  And, I am full circle with Laura.  Recently, Laura's dad passed away.  I saw it fly by in a tweet stream.  I felt compelled to offer my condolences.  And then I went on a hunt for the blog.  I did  find her old blogs but I loved the fact that we were of one mind at the end of 2011 when the NY Times ran a piece about the use of the word cancer.

Laura's post (and the accompanying video) is here, entitled "You Should Apologize for Saying You Had Cancer."

I wrote a blog post which I called, Looks Like a Duck, Quacks Like a Duck.

I can mention here that yesterday was a palindrome day just like I noted in my post.  I can mention that this was all about dumbing down the word "cancer" as it relates specifically to cervical cancer.  And if I am to be honest, I am appalled and disgusted that this story affecting a quarter of a million women in India is STILL buried.  Buried.  Just like women who died of this "non cancer."  They, too are buried.

For now, however, I want to savor these tweets.  Laura, during her moment of grief, took the time, once again, to reach out in an act of kindness.

I've Zig'd and I've Zig'd some more in this post which now makes no sense whatsoever, but I want to keep these tweets where I can always find them.  Yes, it means much when people connect.  Even if only through a computer screen.

@laurazigman I am so sorry 4 ur loss. Way back, I "branted" on ur original blog (2006?). I will never forget ur kindness (u replied)-hugs2U
— AnneMarie Ciccarella (@chemobrainfog) March 2, 2013

@chemobrainfog THANK YOU, AnneMarie. And I remember you.
— LauraZigman (@LauraZigman) March 7, 2013

@laurazigman That's very sweet. I thought about you and that comment when I began my own blog. Keeping you in my thoughts.
— AnneMarie Ciccarella (@chemobrainfog) March 7, 2013

@chemobrainfog Are you still blogging? If so, send me the link. Would like to know how you're doing.
— LauraZigman (@LauraZigman) March 7, 2013

@chemobrainfog Oh God. How dumb. Of course you're still blogging. Will just CLICK ON YOUR LINK IN YOUR PROFILE!
— LauraZigman (@LauraZigman) March 7, 2013