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.

Saturday, November 7, 2015

Cultivating My Watermelon

It's been a long stretch on my journey to get back to my #Happylanche.

Tic tock- we ALL live thinking we can beat the clock. I'm the only one who can resurrect the Love + Faith = Joy and surrender to live life as long as my "house" will stand.  

It's my choice to keep running on my own path - running with the cancer while keeping my household happy, clean, and healthy as possible. 

Always remember that we take nothing with us to the Next Life except for our souls but we do leave a legacy behind.  Only I can build that. I'm on Earth  to cultivate my soul. I can grow a raisin, a peach, or a plum perhaps. I want mine to be a watermelon! I'm here for a reason. I'm here to make my soul juicy; a big fat juicy watermelon.
As I sweat my fears away for the moment... I'm still here. I can cry or smile on the same day and my house still stands strong - for now.

Nobody knows when the wolf will blow their house down so I'll keep building my bricks and unlock the door to the friendly only....

Tic tock. We're all racing the clock - run against it or with it. Only you can decide.

Sunday, July 5, 2015

TESARO pharmaceutical - Will Watch Me Die

The pharmaceutical company, TESARO  are refusing to "unblind" the Niraparib NOVA study for me even though my cancer is progressing. It's in my contract which states that they will notify my medical team whether or not I was receiving a placebo when deemed medically necessary. My doctors have been requesting it for two weeks! I have progression of Ovarian cancer. I'm posting this publicly in hope that someone "out there" can help me. The clock is ticking and my life is hanging.... If you or someone that you know can help me, please reach out to me. Thank you!

You can sign the petition by clicking this link.

This is an e mail that I sent them yet have received zero response:

To Whom It May Concern at TESARO,

Regarding: Niraparib NOVA Study Breach of Contract

I've been in the Niraparib study for 10 months and am now having a recurrence. This is my 2nd recurrence of ovarian cancer. The Niraparib Tesaro group is refusing to unblind the study and tell us what I was taking. This is an illegal breach of the contract and unethical.  The contract clearly states that if medically necessary TESARO are legally bound to  inform my doctors whether your drug company was giving me placebo or PARPs. 

Under these circumstances, I cannot get into any other drug trials or receive the FDA approved PARPs inhibitor, Olaparib, unless we have proof from Tesaro that I was on a placebo.... AND it would be a waste of my time (and life) to give me PARPs again if the Niraparib didn't work.

TESARO have proven themselves to be unreliable and unethical - grounds for litigation and possible closing down of the entire Niraparib drug trial.

I am now pursuing the option of  litigation against TESARO. Your representatives admitted (on the phone to my oncologist) that they are in breach of contract and know that TESARO will lose the case. I also plan to sue for pain and suffering. The treatment I'm receiving by TESARO is cruel and inhumane. I have documented proof of physical symptoms caused by your company's insensitivity and cruelty.

My life hangs in danger and I will take every measure necessary to insure that my legal rights are fulfilled. I will go after you with all I have and I have limitless funds to do so.

Please make sure that your company does the right thing. Your doctors needed to provide my team of oncologists with the information as promised both in writing and during many phone and e mail requests and made by my the Shaare Zedek Medical Center.

Patient #1
Shaare Tzedek Medical Center, Jerusalem Israel

Thursday, July 2, 2015

Keep My Soul Hungry

Just when you think that life is going in one direction, a gust of apocalyptic wind whooshes in and changes your whole life direction. You think it's one thing yet, it's another. Cancer comes and cancer goes.... and it comes back again. Everyone has it. It comes in many forms: depression, anxiety, illness, and grief.
This world is flawed. Every individual is blemished and imperfect and generations of our People survived the worst of times and produced a plethora of successful leaders, artists, and thinkers. Eras that were worse than most of us can imagine gave birth to the greatest periods of development, technology, and advancement of Humankind.

Perhaps this is no epiphany to some however I am beginning to think struggles and challenges are God's gifts to our souls - so we can grow and become closer to Him. Cancer is a parasite that lives only to destroy and overtake the physical body.  Life challenges and struggles are the cancers of the soul. These bloodsucking trials enter our bodies and our souls and we conquer them - maybe for a day, a week, or for years, and make us change and grow.

Maybe I should say, Thank YOU God for loving me and caring enough to challenge my existence on this Earth, making my soul stronger, more involved and rugged. We may live in denial but our lives as mortals are so very short. We are Earthbound for a flash in time while our souls are eternal.

I'm impulsive. I get bad news and I flip out, cry, and lose many nights of sleep. I calm down with thought and some time. I can begin to grope the monstrosity and the terror and feed it to my hungry soul and I pray I can digest it into encouragement and confidence.

I pray to You, God, keep my soul hungry. Let me eat the nourishing afflictions that You send to my body and spirit. Make my eternal soul greater before You take my body away.

Keep my soul hungry. Make me grow better. I know my soul is indestructible and these tribulations will bring me closer to You. I am not the vessel that is a temporary home to my soul. I am my spirit and I am forever.

Wednesday, July 1, 2015

Love Faith And Flying High

This is how I show my love
I made it in my mind because
Blame it on my ADD baby
This is how an angel dies
Blame it on my own sick pride
Blame it on my ADD baby
Sail, sail
Sail, sail, sail
Maybe I should cry for help
Maybe I should kill myself (myself)
Blame it on my ADD baby
Maybe I'm a different breed
Maybe I'm not listening
So blame it on my ADD baby
Sail, sail
Sail, sail, sail
La la la la la la, la la la la la la
la la la la la la, la la la la la la
Sail, sail
Sail, sail
Sail, sail
Sail, sail, sail



Thursday, June 25, 2015

I Thought You Should Know - I Still Have Cancer

Pastoral right?

I still have cancer and I thought you would want to know.
I know how much you care about me and I feel your love and support from near and far.
I don't look sick. I don't act sick - mostly - but I have cancer.

There's this magnificent thing called remission. I've been blessed with two remissions and each time I had hope and faith that maybe the cancer wouldn't come back.  I think that many of us have irrational expectations of what remission is. I did. I thought being in remission meant that I was cancer-free.

Here's the truth... I was never cancer-free after my surgery in 2012. Not in 2013 when I finished chemotherapy for the first time, and not in July 2014 when I finished chemo for the second time. The cancer was always STILL there. It was quiet, resting, hiding; just small enough to evade the PET CT scans and the blood tests.

According to the dictionary, remission is defined as: a period of time during a serious illness when the patient's health improves. Nobody lied to me or gave me false hope. I have a very serious illness and I've been lucky to experience 6-10 month periods of undetectable disease.. Surgery and chemotherapy smashed the cancer to microscopic proportions.

Physically, I seem pretty awesome. I can run a 10K in under an hour. Nobody can see my cancer from the outside. I'm running with it... not from it.

I just received the final results today and the cancer is definitely active and back to being an unpredictable bastard (that's the nicest word I could think of). I've had that inner feeling that something was stirring for a couple of months, and then my cancer markers started to creep up, and then they tripled. Next came the suspicious findings on the PET CT which, were confirmed with cytology results. Today.

I STILL have cancer.

I have no idea what's going to happen next. I hope to celebrate my 40th birthday this year.

Today I'm sad. Devastated. Horrified. I'm allowed to sulk and weep... maybe for a few hours or days... I haven't decided yet.

I just wanted to let you know.

I get knocked down but I get up again.

Every single day is full of miracles and my faith is intact. Please don't tell me that I'm a fighter. Don't promise me that I'll beat this.  I'm not a warrior or a soldier. I'm a lover and a lifer. I'm not a killer and I'm not on a warpath.

I don't know yet. I wish I had answers. I just don't know.

I have to keep at least one step ahead of the cancer for as long as possible.... keep on keeping on.

My favorite quote of the moment is from Albert Einstein who said: There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.

Here's to many more miracles.....

Sunday, January 11, 2015

Still Writing

It's been quite a while since my last original post for Mama Bla Blah. A few months back, I joined a new blog called, Hevria. I have been writing new posts every second Wednesday for Hevria and sometimes linking to my posts here.

With 2014 a mere 2 weeks behind us, and 2015 just beginning to unfurl it's soft and hopeful petals, I am eager and enthusiastic. I reap strength from staring down the many cancers that we continue to live with whether it be the beast we call, terrorism, the loud evil voices of racism, or the sharp destructive blades of baseless hatred, we must search for the light at the end of the tunnel. That light is eternal and we must focus, stretch out our arms, and reach for it.

I'm hopeful.

As long as I live and breathe, I will remind myself of the four most important things I can do to bring light to our earth:
1. Keep my heart brimming with love.
2. Have faith in myself and in God.
3. Maintain hope for the present and the future.
4. Continue living life to the fullest.

Something I struggle with sometimes is self worth. What is my contribution right now to my family, my community, my country, and my world? I've always had a plan. There was always a reason, many reasons, to be where I was and to do what I was doing. Then I got sick. Cancer can be a full time occupation and rightly so, but now I'm sooooooo over it. I'm not done with cancer, I know. I don't ever want cancer to be an excuse. Cancer is not my scapegoat, however cancer got in the way of My Plan. I almost reached the stage of My Plan where I would magically return to my profession as a physical therapist or another branch of my profession; helping people. Healing people. I know what people like to say about plans; man plans, God laughs. God is not laughing at us - He is laughing with us.

When plans get messed up, we need to write a new plan. 

I'm still writing.

I don't know where this new plan is going to lead. I'm hopeful and I'm also realistic and very aware. I'm living like a pro - like a professional lifer. I'm so hopeful that I'll continue to regain strength and hold onto remission. Recurrent, metastatic, stage 4 cancer stabbed me in my remission's back just a little over a year ago. My remission world came crashing down. I literally stared death in it's shadowy intimidating face. I think back to one year ago and I can't even believe that I made it through that period of time! I want to celebrate being where I am today. What a miracle! What a blessing!

Now what?

My last chemotherapy treatment was on July 3, 2014. That was the treatment that pushed my physical body over the edge. We had planned for 6 rounds but my body caved at four. Four is my magic number.

1. Love
2. Faith
3. Hope
4. Live

Less than 4 weeks later, I was hospitalized with neutropenic fever and platelet counts so low I was in immediate danger of bleeding to death. The war raged on and missiles landed all around us from Gaza. I was in the middle of my own personal war, a week in the hospital, praying and hoping to get my blood counts stable enough to secure me a place in a possibly life saving clinical trial.


It's six months later and here I am. 

Where am I?

I've been in the clinical trial for almost a half year already and while I have absolutely no way of knowing whether I'm getting PARPs or powdered sugar, I'm alive and mostly well. I'm trying to accomplish my current plan of living a life full of love, faith, and hope. I'm also trying to do more for my family, my community, my country, and my world. It's what I can handle right now.

I enjoy volunteering for Chibuk Rishon (First Hug), an organization that aims to provide hospitalized abandoned babies with the emotional needs that are so crucial to their healthy physical and emotional development, and recovery. As a volunteer, I visit babies and try to fill the void created by the absence of parents by giving the babies human touch, hugs and cuddles, warmth, and the love they need and want so much. We also care for lonely babies, who do not receive sufficient parental attention for various reasons. We hug babies from all communities of Israel, Jewish, Christian, Muslim; every baby deserves love and care and we are happy and honored to provide it.  Chibuk Rishon makes sure that each baby is cared for by a small group of volunteers that accompany the baby throughout their hospitalization period to make sure that each precious baby is not exposed to too many people. It's extremely humbling and heartwarming work. I'm so grateful to be involved with First Hug and highly recommend joining us or making a donation to the organization.

Another source of meaning to me, is being able to participate in raising money for an organization that I'm proud of, Life's Door-Tishkofet. Two years ago, after completing my first line of chemotherapy, I ran as team captain in the Jerusalem Marathon 10K to raise money for Tishkofet. The following year I returned as team captain but was uable to run due to feeling too weak and ill during second line chemotherapy. I'm not physically running the Jerusalem Marathon, however I'm proud to be reclaiming my role as team captain. By raising money for the organization, I feel myself running towards a better life for people with a life threatening illness. The primary goal of Life's Door-Tishkofet is to transform the experience of facing life-threatening illness from one of anguish, confusion and denial to one that encourages collaboration, growth and hope in the lives of patients, families and professionals. I hope my friends and supporters will consider making a donation, big or small, to this wonderful organization that I hold so dear.

I leave you with my latest post on Hevria, which sums up my resolutions for the years to come.