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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.

Update
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.....

30 comments:

  1. when you want a partner for the day/night. trip to the desert, beach, river, -- call me. Im there

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  2. You are unbelievable. You are an inspiration. I'm going to post this on to my STUCK Facebook page for my readers to see as well. You are wise and may you continue to be blessed.

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  3. Wow. You are such an inspiration, and I guess all that there is to do is wish you all the goodness the world can give you, health and happiness. And to let you know that your story and your strength and faith go far beyond the time and space of the cancer, and will be told and remembered, and will be inspiring people, for many many years.

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  4. I am in the clinical trial field, although in a tiny Israeli company, if there is anything I can do, let me know. We strongly believe in family quality time and you have an amazing family :-)

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    1. Thank you Hadas and I would appreciate your help in any way possible.

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  5. May HaShem richly bless you and your family. Your courage and bravery is inspirational and a role model for others. You are the embodiment of dignity. Shalom to you.

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  6. Well said and I believe that would be my decision as well. You are courageous and strong and am proud to call you a friend. See you on the street running......

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  7. Yes, you are here for a reason, and you are fulfilling it b'ahava and b'emuna. Total respect for you. Wishing you joy and long miraculous years.

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  8. Wishing you only the very best.

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  9. Ahava Emunah your optimism and hope have enormous significance to live beyond the limits of this illness. You remind me of my mother, who went to work, took adult education courses, and traveled across the world throughout the course of her ovarian cancer - nothing stopped her, and her oncologist B"H was her biggest cheerleader who never EVER lost hope. Hope enabled her to let go in peace and with fulfillment. May you be blessed with continuous optimism, hope, and love!

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    1. Amen to your blessings Debby and thank you for your encouragement!
      xoxo AE

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  10. May your good health continue forever!!! Enjoy...

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  11. Ahava Emunah-As always,you are so clear and focused . Your message is one for every person-those with illness and those fortunate enough to be healthy at the moment: To cherish each moment with the people and the values that we hold dear.
    Your family is so lucky that you continue to choose them...love you my friend. I am here for you if there is something I can do to support your journey....

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  12. Every road you take, must be the road you choose. There are blessings and curses on every road and no one can know until they travel it. You've built a whole world of love and faith around you - you could not have picked better names for yourself...well, even if you'd picked them yourself :-)

    You are Ahava and Emunah. Your family loves you. Hashem loves you. We all love you and if this is where you are...we are there with you!

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    1. Paula thank you for your warm blessings and words of faith and hope!
      be"H
      xoxo AE

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  13. You are in my heart and always will be!

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    1. Thank you Lucille! I feel your love and support!
      xoxo AE

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  14. Wow.Very courageous.You are so strong.

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  15. My teal sister across the miles - I too have metastatic ovarian cancer in my liver, lungs, spine and lymph nodes. I am on my 4th chemo drug with hopes that it will stabilize my tumors, not eradicate them. I am also waiting for entry into one of two clinical trials, which will guarantee me the drug. However, funding is very slow in coming from the government. I often find myself wanting to toss the chemo and just spend time with my beautiful sons, then I realize I am quite blessed to have a doctor who is honest and tells me it's still time to fight.

    Your choice to live on your terms is an inspiration. May God bless you with joy, peace, and the time to accomplish all of your dreams.

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    1. Thank you my teal sister, Michelle,
      I appreciate your words of encouragement and for your sharing - it can only give me hope. YOU are brave! FOURTH CHEMO and I'm finished with "only 2".... I cannot do chemotherapy again! It's too much. Perhaps I am a wimp.....

      May G-d bless you with continued strength, joy, hope, and love!
      xoxo, AE

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  16. Love and light to you! May you have abundant joy and decreased suffering. Namaste <3

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  17. Your name suits you more than anything.......your emunah is so strong that it radiates to those, like myself, who have never met you. Your message of love of life, (Ahava) has reached all who read your words. May HaShem bless you for the rest of your life and may He give you the needed physical and spiritual strength to endure any test ahead, that you may continue to enjoy your family and friends without any pain, in true and full happiness. Amen.

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  18. I am searching my brain here thinking: "What would I want my friends to say?" It's this: I admire your certainty in your path, and support your decision to enjoy life to the utmost, for as long as you can. You are in my heart.

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    1. Thank you Varda! I haven't given up faith or hope however I REALLY need a vacation from Cancer!
      xoxo AE

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  19. This is very unfortunate news, very sorry to hear it.
    Most people would have succumbed to it, allowing themselves to feel helpless.

    But you manage to face it, with dignity and ready to take action.
    This is the best way forward. We wish you all the luck in the world.

    PS. Do all oncology trials in Israel have a placebo arm?

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    1. Thank you.
      There are different trials. Some are randomized and some aren't.... we have access to some of the same studies that are in Europe and the USA. Remember that Israel is a small country so not everything makes its way over here.

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  20. Enjoy your family, make memories that will stay with them always and may Hashem bless you and them.

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