Tuesday, February 9, 2016

Can I Still Fly?

I get it. There's no "over and out". 

There are nightmares and pleasant dreams but at the end of night when the sun has risen, I must get up and remember my own mantra

Life is a Journey. 
I'm here for a reason: to make my soul juicy.
This world is only the beginning.
Love + Faith (and hope) = Joy

Those who know me know that I'm no warrior. 
I'm not a soldier.
I'm not a fighter.
Cancer isn't a battle to win or lose.
Cancer is a life threatening illness that often ends in death.

My Life Journey sometimes feels like a dream and sometimes it's truly a nightmare. I'm already an expert at talking myself down from metaphorical cliffs. I'm an expert at avoiding the most terrible of beasts. 

The ground rumbles and shakes beneath me as It draws closer. Again.
I detect a whiff of It's rancid smelling jaws. 
I've avoided It's razor sharp claws - twice.
I've succeeded at outsmarting It once, twice....
Now it's the third time. 
It sure is tiring living with that beastly stench and hot moist breath just a few paces behind me.

It's the third time.

I still love. I still have faith. 
I hear the crunching of hope, like glass, beneath the claws of the beast. 

I've found myself at the edge of the cliff again, for the third time.
I look down and I can see the bottom.
I look up and I see an endless sky.
I'm tired, so I sit down to rest with my feet dangling over the edge of the cliff. 

That beast is coming, I smell it, I feel it, I know it. 
I know I have to stand up. Again.

Would I dare let myself slip over the edge? 
The bottom is not where I want to end up.
I'm calcified and stuck in this position. 
Petrified, restless, and thirsty, yet I sit here. 

The beast is determined and relentless, and here.
Can I still fly?

Wednesday, January 27, 2016

Over And Out

I received my PET CT results.

I have progression of cancer; new tumors, tumors that worsened, grew larger and stronger, as well as metastasis to my liver.

According to my oncologist: these results aren't catastrophic and I still have time to work out a plan. He estimates that I have around 6 months until this situation may become life threatening and I would be expected to start treatment as a life-saving measure.

When I was in LA, CA over the summer, I researched options with immense effort and help from my family there as well as a dear family friend. I returned to Israel excited that I have options however none of those "options" are responding to my incessant emails and messages. 

I was hoping to get into an immunotherapy clinical trial. In LA they have those where ALL of the patients receive the drug - no placebos.

In Israel there are immunotherapy clinical trials however they're randomized - meaning some patients receive the drug and some receive nothing (a placebo). I will never participate in such a trial again.

I've researched new doctors and old doctors. I've spent hours on the phone, online, and writing emails. I'm exhausted. I've hit the wall and every possible roadblock.

Cancer is a full-time job and I am done working. I'm going on "vacation" from cancer. I'm finished with this part of my journey.

Whatever is already in motion - great, and if something comes of it, great too.

I'm ready to live out my life - however long it is. I want to have the quality of life that a cancer patient can have while not being treated with chemotherapy. Chemotherapy isn't MY answer; it didn't work. A few months of remission isn't enough reason for me to suffer for months of nausea, mouth sores, and other unpleasant side effects. The recovery time after finishing a round of chemotherapy is longer than the actual treatment. Chemotherapy overtakes my life and creates chaos beyond belief for my entire family.

I'm happy and I'm healthy - except for these pesky and persistent cancerous tumors.

I'm happy and I'm also done.  

I'm not wasting anymore time researching and begging doctors to help save me. 

I'm not bitter. I'm not sad. I'm emotionally exhausted and feel like I'm spinning my wheels in the mud and getting nowhere.

I must enjoy what's left and make meaningful memories with my children. I can't enjoy anything as long as I'm sidetracked and constantly on the phone and researching cancer treatments, doctors, and options.

OVER and OUT.... It's time to put my words into action. I'm here for a reason and I don't believe it's to do chemotherapy every year or waste my limited time dwelling on an incurable disease.

I  am  done.

I did not quit. I needed a vacation- lights out, pillow over head for a couple of days.

I'm blessed with family and friends and doctors who continue tirelessly to find SOMETHING else to try.....

Tuesday, January 12, 2016

David Bowie Died And That's Not Why I'm Sad

Photo credit: Sarah Raanan

Yesterday, January 11th, 2016 when we all heard the news that David Bowie had passed away on January 10th from an 18 month spasm in the throes of cancer... I felt nothing. I was sorry to hear of his passing.  I certainly took time to read about him and celebrate his legacy of artistry and music yet I felt zero sadness. The magical wonder that was David Bowie lived a tremendous life. He chose not to publicize or share his cancerous Journey.  Perhaps Bowie wanted to go out remembered as the vibrant colorful collage of mystery and music that he was and still is. He died so privately that it's almost as if he still lives. His legacy is huge; the chameleon that he was. Bowie transformed and restyled himself so many times from thrift shop styling to Ziggy Stardust, Aladdin Sane, to the very drugged out insane and nasty Thin White Duke. He was Hunky Dory and The Man Who Fell To Earth. Bowie was Pierrot and a Goblin King in the movie, Labyrinth. In the 80's he seemed to embrace the ordinary 80's pop-star-in-a-plain-black-suit persona and later became a reclusive Outsider, the Older Dude with the long hair, and now we all know his final resting place is Blackstar. It's no coincidence that his newest and last album, Blackstar, came out on January 8th, Bowie’s 69th birthday; only 2 days before he died. That's simply wondrous and in true Bowie form, startling, shocking and the outcome... NOT ordinary but electrifying!  I have no idea what type of cancer or treatments Bowie endured while he skilfully, competently, and expertly produced what's being touted as some of his greatest work ever. Bowie kept his cancer private and obviously continued to work hard and produced an album that will skyrocket in sales and downloads. 

This is about David Bowie but it isn't. I am familiar with his music and know most of his work, and what I learned about the man, born David Jones, yesterday made me stop and think about how I've been publicly sharing my own cancer Journey. A lot of what I've "produced" is a result of being forced down a fork in the road on my life journey three and a half years ago when I was first diagnosed. I went public with every detail almost before the anaesthesia from my surgery wore off; posting pictures on Facebook with tubes coming out of my nose and every other possible orifice.

My tears started flowing today when I learned of the passing of a young mother. I saw splendid and lively photographs of mother and daughter via a friend's Facebook post accompanied by grievous tragic news of her passing.  Evidently I had completely blocked out our one and only meeting from my memory. It was a sunny summer day at a work event at the waterpark. Just now my husband reminded me that I had a difficult time coming face to face with her. I was friendly and engaging and she and I spoke for quite a long time. According to my beloved, I recoiled during a private moment at her unmistakably pallid condition. It was mere weeks after we'd received the news that my cancer returned, metastatically relentless for the third time. I selfishly couldn't embrace the possibly-inevitable-future-me. I received a few updates about her deteriorating footing in This World until my sweetheart stopped sharing altogether; protecting me from sorrowful debriefings. And I failed to ask.

David Bowie was a talented artist with unique style that will never be reproduced. Bowie had intriguing androgynous beauty. He lived to the fullest for 69 years so his life wasn't too long and certainly not too short. He lived and died on his own terms and his cancer journey went undetected by his fans and the media. For me, Bowie's death symbolizes a celebration of his colorful life by virtue of the undeniable legacy of music and performances that are timeless. I don't believe David Bowie died with a heavy heart. He went on his own terms after an amazing life leaving a legacy that has already "gone viral" as Meta-Bowie.

You will NEVER know what it's like to be dying until you are and I shed zero tears for David Bowie who lived life to the fullest and squeezed every last drop out of it for 69 years and went out on a high note.

I am crying today. The stark difference between real life and what is "Meta".

Today, I weep bitter tears for a little girl who lost her mother. As I inspect and analyze each delightful pose and jubilant smile, from a photo session only one year ago, the loving bond between mother and child grabs me by my soul. I cannot escape the finality and it's not about me. A woman; a mother of blessed memory had metastatic cancer. I knew that and so many people I know are in mourning over her tragic and premature passing. These beautiful photographs of a smiling mommy and daughter are a tribute to a beautiful life lived with love and devotion. I promise to hold a meaningful space for her young daughter in my prayers and deepest longing for a future filled with the eternal love that her mother left behind and a hopeful future surrounded by those who will continue to love, teach, and protect her. 

Thursday, January 7, 2016

Latest Posts on Hevria

I have been writing for Hevria dot com for just over a year. It's a great site and definitely growing.

Here's a link to my articles at Hevria. I also recommend taking a look at the other writers' work... we have some very special people writing and I'm proud to be a part of such a great group.

Wednesday, December 23, 2015

Soul Fruit - My Journey - Full Video

My life is a Journey. We are all on a Journey. This past year has been full of ups and downs and most recently, in May, I took a nosedive to one of my lowest points ever. I’m regaining my #Happylanche – one of the many goals of my Journey which includes creating my own avalanche of happy events for myself and hopefully others.

Every life, even the longest of lives, is a tiny part of existence. Our bodies are temporary and mostly serve to provide home and shelter to our souls.

In this talk, I give some background about the cancer, BRCA mutations, and mostly I talk about how cancer is just one of the many parts of who I am. We all suffer from something and it’s my choice to keep moving on my own path – running with the cancer while remembering that this physical life is temporary and I have a purpose; each and every one of us has a purpose.

We take nothing with us to the Next Life except for our souls. I’m on Earth to cultivate my soul. I can grow a raisin, a peach, or a mango. I’m here for a reason. I’m here to make my soul juicy; so why not a big fat juicy watermelon?

I’m very passionate about these thoughts and beliefs and so speaking publicly feels like a recreation. I enjoy speaking to groups and luckily have had quite a few opportunities.  A few weeks ago, I had the honor and pleasure of speaking to a group of women in Ramat Bet Shemesh, Israel. Two seminary girls recorded my talk on their iPhones and I’ve edited the recordings into a shorter version. It’s about 27 minutes.

I don’t claim to be inspirational or special. I do know that I have a purpose and I do know that some of the information that I share is potentially life saving. I am just a grain of sand on this immense beach that makes up my world. I hope I don’t fulfil my purpose on Earth too soon. My life is in His hands.

Monday, December 14, 2015

Speaking of Journeys....

Over the past few years, I've had the pleasure of speaking to different groups; to doctors and medical students, the general public, and for institutions and organizations. As anyone who knows me sees, I express myself openly and shamelessly via my writing and social media. It's an honor and also humbling to receive feedback. Through my outreach and via my writing, I've met people in person and virtually - from around the world who have touched my life in ways I never would've known.

Public speaking, for me,  is enjoyable because I'm so passionate about the subject matter. I'm passionate about spreading my message and about saving lives. Whether it's inspiring or informative; that's for any individual to decide. I don't TRY to inspire. I view myself as a vessel with a purpose. I'm just a tiny grain of sand on this temporary part of this journey called: life on earth.

I recently spoke to a group of women. I had an inspirational singer with me. While I won't post my friend singing publicly, I will share an edited version of my talk. I've yet to upload the full 31 minutes to YouTube.... so here's the "trailer".

We're all on a journey.

Tuesday, November 17, 2015

Fundraising For Litman Family (Rav Yaakov Litman z"l and son Netanel z"l)

I set up a GoFundMe fundraiser account 
after the double-murder of Rabbi Yaakov Litman z"l and his 18 year-old son, Netanel z"l. Their car was filled with 7 members of the Litman family. They were on their way to the Shabbat Chatan in Metar (where I lived for many years and my parents have lived for over 20 years), for their daughter Sarah’s groom, Ariel Biegel, son of Rabbi Biegel (the rabbi officiated at my wedding nearly 15 years ago).

Rabbi Litman's daughter z"l, Sarah, was to marry Rabbi Beigel's son, Ariel, tonight  - Tuesday, November 17th.

As I write this, Sarah is sitting Shiva for her father and brother and the wedding is postponed until next Thursday,  November 26th.  

The generous families have invited basically all of Am Yisrael to the wedding and I believe that people will generously  give wedding gifts to cover the immense costs of the wedding. 

Thinking forward.... Many people would like to help the Litman family who tragically lost their husband/father as well as their son/brother.