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.

Sincerely,
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



Sail
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

(Sail - AWOLNATION)

 

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.

http://hevria.com/ahavaemunah/cancer-best-way-live/




Wednesday, December 24, 2014

Via Hevria M&Mspiration



http://hevria.com/ahavaemunah/mmspiration/
From birth until the age of 12, I was raised as an assimilated American Jew. I only learned of Israel’s existence when I started Jewish Day School in the 8th grade. We had the unlit house at Christmas time and my brothers and I were the only kids without Easter baskets; how I longed for those jellybean filled eggs and marshmallow Peeps! At public school, I was the nominal Jew, the one in a sea of White Christians, a handful of Native Americans, El Salvadorians, Mexicans, and two Black kids. My family seemed to stand out in the small towns and Reservations we lived on. Read more....

Sunday, November 9, 2014

Good-bye Forever Denial


It cannot possibly be okay or right or acceptable to have to say good-bye forever.

Rosh HaShanna and Yom Kippur thrust me into thinking about morbidity and of course reflect on the unknowns of the future and my life. I'm miraculously in remission for the second time. MIRACLES. So why do I think about death? Why would I need to worry about that right now? Today, everything is fine, praise G-d. Yet, the decorations I never got around to taking down from the Sukkah are fading and winter is nearing and I'm wary of jumping too far forward and pushing the hope out of balance with a bit of unexpected bad news.

As Humans, we are born with the ability to deny. Our denial allows us to live and breathe and function as forever-creatures in a very temporary world. My first brush with mortality was at age three. My parents instilled a great love and respect of animal life in me from birth. We always had pets; cats, dogs, hamsters, gerbils, and even goats, sheep and other farm animals. I was entrusted with their care. I was reliable. At age three, I was gentle and took painstaking care of my pet gerbil until one fateful day. I was playing "house" and I was the mommy. It was bedtime for my baby (the gerbil). As a doting mother, I read my "baby" a bedtime story, Marvin K. Mooney Will You Please Go Now, to be exact, and tucked baby gerbil into bed. Unfortunately for the gerbil, bed was between the pages of the Dr. Seuss classic; a bunk bed. I took the top bunk, which obviously didn't provide a happy ending for "baby". When nap time was over, I experienced death for the first time as I peeled my poor (flattened) pet gerbil from the pages of, Marvin K. Mooney Will You Please Go Now. "It's NOT moving! My baby won't wake up!" I wailed and wailed. I've heard this story repeated so many times. It's a favorite in my family, a legend. That was the day I learned about death and saying goodbye forever. When I was 8, we left our Golden Retriever, Ruby, overnight in the care of our eccentric next-door-neighbors who buried her less than 12 hours before we returned, when she died suddenly while in their care. I've since had to say goodbye to countless pets because, for some reason, cats and dogs were given a fraction of the lifespan we, humans, were blessed with.

From birth, we know that the worst thing that could happen, in the whole wide world, is death. If someone died, that was the very worst thing. When I lost my Grandma Frances, that was the first time I felt the true searing pain of losing a loved one. When Grandma Frances died, I met death. I was very fearful of it. After that, I started sneaking into my twin baby brothers' room at night to place my hand lightly on their chests and make sure they were still breathing. If my dad was late coming home from work, I feared a car crash had taken him away forever. I didn't want my parents to get older. I considered myself lucky to have young parents and I never wanted to think about the worst thing in the world. At some point, my nightly fears and insomnia were again replaced with the delicious denial that allowed me to forget that my parents and all the people that I love would not live forever. Instead, every night I said prayers. I had a ritual in which I would list each member of my family and ask G-d to bless and protect them from danger, sickness, or death and I begged for long lives for each and every loved one. We are born with the gift of denial because how is it possible to survive the pain and anxiety that would accompany the truth of human fragility?

I made it through my army service in the Givati Brigades of the IDF and experienced Human fragility again and again; over the Lebanese border and on the southern front too. After a bus bombing, in Kfar HaDarom, we lost 7 of our own on one day and it was impossible to attend all of the funerals because there were too many. I came in contact and more comfortable with impending death during my university studies. For two years, I dissected human cadavers in my Human Anatomy course. I cared for hospitalized patients and experienced losses. We talk about "getting that call in the middle of the night" and we fear that "knock at the door" and then one day I got a call. It was my mom calling and my dad was very sick. But… he had just run a marathon! But… he was barely 50! But… my dad "suddenly" had stage four colon cancer and was dying. That magical denial gets broken and you run out of tools pretty much on the spot when you get that call. That's when faith is priceless. When doctors gave my dad little hope for survival, we had to cling to miracles and praise the L-rd we received them. My dad beat the odds and the statistics and is thankfully healthy and cancer free almost 10 years later.

Then it was my turn. Stage 3 ovarian cancer at age 36. Recurrence and stage 4 less than a year later. There's no more denial. I have looked death straight in the face and I'm no longer afraid. I fear not death. Not at all. The tears of my young children put a chill in my bones and curdles my blood. "Mommy, PLEASE, don't ever leave us! Mommy, don't ever die!" My own daughter sobbed, just the other night. It was the first time that those words came out and it opened the flood gates. The magic denial, that lets children sleep at night, no longer dwells in the Lange house. My children have seen their mother go bald from chemotherapy and when the cancer went away, we celebrated and rejoiced. And the cancer came back. You can't fix the denial magic once it's broken into so many pieces, it's gone forever. The only thing we can do is acknowledge it and make it okay.

I've said good-bye to many friends. Friends who are my age and younger. As my circle of grief grows wider, it also makes me wiser. I'm crying for my friend who was snatched away by the gnarled claws of ovarian cancer, leaving a bereaved husband and four young children. I'm celebrating that she's no longer suffering and yet I want to put my fist through a wall and smash everything in sight. I want to scream... but what good will that do? She is gone forever. Good-bye forever.  I will pray for her family. I hope her husband finds new love someday... when his heart heals, when he is ready.

What does a mother say to her crying frightened children? I don't know what mothers say but I can tell you what I always try to do: tell the truth and speak from my heart. When God chose to make me your mother, He knew exactly what He was doing. God chooses the best possible parents for every child that He creates. My job, as a mother, is to love, nurture, teach, protect and discipline my children from pregnancy and birth and as long as is appropriate. I will always work towards that goal of preparing each of my children to survive and thrive, happily and fully, in the world. I hope to impart love and kindness, strength and courage, morals and goodness, and faith and more faith. I tell my children that I'm doing the very best job that I can to prepare them so that when they're ready to be grown-ups, they will have all the tools and all the skills to make their own decisions and build the lives that they desire. "But Mommy, if you're not here.... how can we go on?" and I have a response to that as well. I tell them, I'm here now. I'm in no danger of leaving you today or anytime soon but when that time comes (May it be in 100 years!) you will go on and you will make your life as happy and rich as you can. God willing, I will do my job well, and you will be ready and prepared to build your life exactly how you decide and I will be so proud that you are able to make your own choices. I will be happy, wherever I am, to know that each of my children is happy in the lives that they choose. There's a calm in our space when I say those words and I take the opportunity to insert an example. Some of the most accomplished and unique people had to go through terrible tests in their lives. A stark example, in our time, is the aftermath of the Holocaust. Thousands of survivors endured pain and suffering that is beyond the scope of imagination. Many of the survivors of the Shoa left Europe with little more than their skin and bones, yet they retained their dignity and most of all, their integrity and ability to not only survive but to thrive! They found love and meaning. They built families, homes, and communities. Not without pain and regret. They never forgot the loved souls that they lost. They glorified their memories by excelling and finding joy, love, and success.

I don't want to die.
I don't want to leave my babies behind.
I don't want to make people sad.

People die and the world keeps on spinning. It's the right thing to do. Bereaved spouses remarry. Children can and should feel free to connect with a new parent. I would want these things for my husband and my children. It's not okay to have to say goodbye forever but I know that it will be okay. I can make it okay. It HAS to be okay! It's not right or acceptable until it happens. If it happens, it needs to be okay.