Tuesday, April 26, 2016

Random (and not so random) Acts Of Kindness

Melabev Bat Mitzvah girls baking challahs in my honor and holding up signs that say, "AHAVA EMUNAH" in Hebrew

This is another piece about.... me. About cancer.

I am happy - you knew that, and I prefer to drink my coffee from a heart-shaped mug. I prefer everything heartshaped, marked with "LOVE", pink, rainbows.... you name it.

When I think about my journey, what comes up so many times - in my soul - are the acts of kindness that I constantly experience.

I have friends and neighbors who bake or bring small tokens of their "thinking about you...." gifts. I receive acts of kindness from around the world and in my community.  I receive letters from strangers and aquaintences via Facebook or e mail, and even from celebrities in the form of video clips!

There is an extra special group of girls, in a Bat Mitzvah preparation program, who have been adorable! They baked challahs in my honor for a refuah shleimah (speedy recovery). I had the merit of speaking to them a few months ago about kindness towards the sick.

 I was so impressed by the sensitivity of the questions asked. I'm hopeful for our future, knowing that such thoughtful and special young women are already on the path of good deeds.

The other day, I received a CD of beautiful and calming piano music from a musician I just met! He must've gone through the trouble of aquiring my mailing address to send me the professionally made CD of his piano talent!

The point is not how lucky I am, but how hopeful these acts of kindness make me about my inner circle and the entire world in general. I don't live in a hole... I know there's immense pressure and strife from sea to sea. Here, in my tiny bubble, I live amongst the beauty of rainbows and unicorns. sometimes I'm openminded enough to see it. It's so precious; I must share it with the world!

Pass it on.... random and directed acts of kindness will save the world! Curing the world with kindness, one act at a time... We may all be like tiny pixels or minute grains of sand. We each have the ability to sparkle and uplift our own souls. By making our own souls "juicy", we heal the world.

Thursday, April 21, 2016

Back To Black

over 2 liters of relief from my abdomen (actual photo)

I loved her raspy voice from smoking too many cigarettes, and probably doing too much blow. I loved her music before she hit the mainstream radio circuit. She was a seemingly smart girl who could sing the life into a dead tree trunk. Her songs were sometimes dirty and dusty - too old for her youth. Her cancer was addiction and I take one of her hits and make it my own; I keep going back to black. Her back to black was bad and so is mine. Of course, she was Amy Winehouse and I'm me - night vs day. One difference is my black has the ability to kill me into living again. If my poisonous black works, it could possibly give me a year or even two.... time to stall and wait for the next nasty bet.

I've had no time for regret, sore lips licked wet
This is the same old nasty bet 
Me and my head high, and my tears dry 
Get on with my life I try
Chemo takes me back to what we know, so far removed

From all the living I will have to throw

And I tread a troubled track, my life is stalled
I'll go back to bald
I don't want to say goodbye with words
I know I'll die a hundred times 
 It's the same old nasty bet

And I go back to, I go back to sick and bald
I love life so much, it's not enough
Cancer loves death and I love the shore
And life is like a dream
And I'm a tiny pebble rolling against the stream
I never want to say goodbye with words
I will die a hundred times
Life will go on without me 
And I go back to...
We only said goodbye with a glance
I died a hundred times

Life will go on without me
And I go back to...Black, black, black, black,black, black, black,
I go back toI go back to...We only said goodbye with a glance
I died a hundred times
Life will go on without me
And I go back to
We only said goodbye with a glanceI died a hundred times
Life will go on without me
And I go back to bald.... and black

My black isn't a hole - it's mixed with hope. This black is my THIRD time doing chemotherapy. I don't know anyone like me. I've never met a gal who has/d ovarian cancer, that started in her thirties like mine did and is still alive after not one recurrence, but TWO in less than 4 years. She doesn't exist - except for me that I know of. I'm her. It's lonely going back to sick and bald... and black

A few days ago, I had well over 2 bursting liters of malignant fluid drained from my abdomen. On the scale, the next day, I was 12 pounds lighter! It's not the weight (fluid) I lost but the life I gained! I'm like a new person - I can move and I can breathe again!

I'm scared of going back to that horrible place. Chemotherapy. For years people have told me about this chemo drug that they refer to as, The Red Devil. They ask me with a suspended voice, "Did you ever have to DO the Red Devil?!". I thankfully say NO. But now the time has come and I'm doing Carboplatinum along with the famous Devil.... The Red Devil. I'm terrified yet I have hope. 

I recently internalized that hope doesn't mean false expectations for something nobody can promise me. Hope can be any pathway to a better place. A positive place. Hey, I can probably teach a seminar on what hope is! This is a new revelation for me. I once thought that remission meant I was clear of cancer and that was a mistake I won't make again. I will never be clear and clean of the beast that is deathly and nasty enough to take the life-breath out of a human being. I can make each day worth living and I can hope for a better tomorrow.

So, yes, it's back to black.... I'm scheduled to start chemotherapy May 1st.... May Day! May Day! Hope. Love. Faith.

Please keep me in your prayers: Ahava Emunah bat Chava Ehta

Sunday, April 17, 2016

Am I On Or Off?

Haha... time to get back up on the spinning horse

It's been 2 years since I have been on, in, under chemotherapy. Chemo is one of the worst things I've had to go through; twice. I went so far as to swear I'd never do it again. I swore. When will this damned ride stop spinning? I want off.... Ha! That's a defeatist attitude if I ever saw one!

I have cancer. It's the bad kind; the one that usually kills people and not just people - women only. It's name is, Stage IV, Persistent, Recurrent, Metastatic Ovarian Cancer. It's the cancer that's given me a voice that people listen to. 

Remember that blonde character from my favorite children's story? Why do I love her so? She came out with things like: 
“Why, sometimes I've believed as many as six impossible things before breakfast.” 

“Who in the world am I? Ah, that's the great puzzle.” 

“Curiouser and curiouser!”...  

Alice got to live even though she almost died a few times, ate some funky shrooms, shrunk, and grew, and got past the Jabberwocky and the Chesire Cat without a flinch.

It's Redline time again. Time to decide which poison to take to try to shrink the cancer. This time accompanied by a tummy full of what's called, ascites (ass-I-tease). Ascites is malignant fluid and I have a belly full of it which has probably been the true reason for the growing "alien" belly I've been blaming on an inscisional hernia, which irks me to no end.

I haven't written in ages because what have I to add? In December, I spontaneously fractured my 3rd rib on the right side - it just snapped for it's own reason. It resnapped in February and has been the cause of a deep hibernation, hospitalization, and just a very low period for me requiring heavy pain med.s and a messed up daily schedule of mostly sleeping.

Now the cancer is spreading and rearing it's ugly monsterhead. I'm imagining something like the ugly Jabberwock... more commonly known as The Jabberwocky.

Chemotherapy or not? I'm supposed to start ASAP and no, I don't want to. I also don't want to die.

I can't feel right. Am I on or off the carousel? Is my head spinning or is it my whole world that's spinning out of control....?!

Tuesday, April 5, 2016

Speaking Up

Hear I am speaking in English - at a special evening sharing "approach to life" (Gisha L'Chaim) at the health clinic, led by Dr Karen Lewis, Meuhedet. 

Food for thought and new tools on "How to talk with people dealing with a life threatening disease". 

This is the 2nd part of a lecture - after Neuropsychologist, Dr. Judy Gedaliah, of Shaare Zedek Hospital. Subjects and concerns in a unique combination of knowledge, humor and experiences...

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.