Saturday, February 8, 2014

Mania and My Happylanche

My journey has taken me on a roller coaster of experiences and emotions... and I'm pretty sure that we're just getting started. I can't speak for anyone else or their own journeys with the often deadly, cancer, however for me it has been and continues to feel like a very manic chronic condition.

This manic condition includes euphoria, blood curdling fear, uncertainty, hope and joy, sometimes anger, deep sadness, and even silliness, laughter, and fun. When I was first diagnosed, in July 2012, I had no time for any of the emotions... it was BAM! Surgery and then an absolute avalanche of happiness and then euphoria. As soon as I was able to take my first steps in my hospital room, I floated on air because I truly believed that I beat cancer. We slayed the beast! The chemotherapy, that was to come shortly after, was just a "mop up job" - kind of like insurance to make sure that any sneaky remaining cancer cells were snuffed out like the little murderers deserved.

Fast forward to the end of 2013 and roller coaster derailed. Cancer is back. Ok, but wait, there's this really cool experimental yet promising surgery called, HIPEC. And there are these promising new drugs called, PARPS, that are in advanced clinical trial stage. Then BAM! PET CT scan reveals metastasis (Metastasis, or metastatic disease, is the spread of a cancer from one organ or part to another non-adjacent organ or part) in my liver, next to my heart, and spleen, and later discovered in my diaphragm too. So HIPEC is off the table. PARPS can be my lifesaver but clinical trials available are 2/3 meaning 1/3 get a placebo (a harmless pill, medicine, or procedure prescribed more for the psychological benefit to the patient than for any physiological effect.). Thankfully, with the help of leads, my DH, and of course my personal oncologist, Prof. C, we investigated and decided on trying biologically personalized oncology with Champions Oncology teamed up with Johns Hopkins. This required a team of Shaare Zedek's excellent thoracic surgeons headed by Dr. Maher Deeb, not only a top skilled surgeon but an extremely kind and caring man. Thankfully, 2 cancerous samples were removed and grafted into mice. The mice arrived safely in Baltimore, USA, and we're waiting for the completion of the process and praying for success at finding a treatment for me.

It's been a month since surgery. The pathology on the infiltrated lymph node came back and one of the things we learned is that the current cancer is hormone receptive which means I should, in theory, stop taking HRT aka estrogen. Plenty of women on earth go through menopause and never take HRT. They experience what they experience and move on. Great. Lucky them. Surgically induced menopause is a nightmare for me. I experience many things, the worst being extreme nausea. Women who had nausea in early pregnancy can understand what I'm talking about. AND THAT... is what kicked off my bout of a manic nosedive to the depths of despair. Nausea, exhaustion, depression; deep and dark.

Time to move on. I'm not staying there. It's not fair to my husband, my kids, my family, or myself. Under medical guidance, I am continuing to take estrogen - for now.

I feel like now is a perfect time to address a few things. 

First of all, cancer is a killer.
 
If you've ever (G-d forbid) had cancer and you've survived it, YOU are very very lucky! AND I'm happy to hear all about it.
 
If you have a friend or a grandparent, a neighbor or some distant cousin who once had or currently has cancer.... do me a favor, save it. Your stories not only do not help me but they upset me. They drain me and make me want to screen your calls and delete your unread e mails. Harsh? No. Why would someone with stage 4 cancer benefit from sad stories and tales about other people's struggles? I have a limit to how much sadness I can handle in my own life. I have real friends in my inner circle who are struggling with illness - these are real to me. At this time in my life, I just can't add to it.
 
Please don't try to raise my spirits by informing me that there are people worse off than I or that any given person can be struck by lightening, or a bus, or a bomb.... seriously? I HAVE CANCER! It's happening now, today, 24-7. Should I really be worried about lightening or buses? Will that make me grateful or thankful? No, it doesn't. It's just insensitive. It hurts me and makes me turn the volume down on my imaginary hearing aids.
 
Lastly, please don't apologize or feel bad for "not being there for you". I get a few messages like that and honestly, I don't notice people NOT being there for me. I notice ALL the people that are. So, busy moms and overwhelmed people... do not feel guilty or bad or worried! If and when you are here for me, that's awesome and I love and appreciate it BUT I won't notice if you can't be and I certainly won't hold it against you. Every act of love and kindness feels wonderful yet none of it is taken for granted or ever expected. Just do what feels right to you. I am not keeping tabs on who doesn't....

Anyhoooooow, I'm going to try my best to beat this. I have to stay healthy and hopeful, realistic, and keep on keeping on. EVERYTHING else is in place. Wonderful family and friends! Supportive and loving people all around me both in person and afar! I know that studies have proven that mindfullness helps fight disease. I want to rebuild my happy armor and gear up for the next battle. I wrote earlier, on Facebook, that I want to kick off a Happy Avalanche - a Happylanche! Let's see what that means.... to be announced!

7 comments:

  1. Are you taking suggestions? I'm thinking a cake shaped like a mountain, frosted and covered with dessicated coconut... :) Good to start the week on this note, wishing you a great one.

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  2. Erika, you are just awesome. You will never know the extent of the power of each blog, each sentence, and each word on the rest of us. Love to you and David!

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  3. This post has been included in this week’s edition of the Jewish-Israeli Blog Round-Up!

    Please visit, comment, and share!

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  4. you are unbelievable,your spirit and strength are something to behold.

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  5. Erika you are an example to every human being. Your writings are so well written and Louis and I are with you all the way. Keep your spirit up. Miracles do happen. Luba and Louis Klein, Perth

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  6. Wishing all our healing vibes could make a difference, but I am sure your own attitude is the best thing to accompany your fight. Your spirit and wonderful writing has a great affect on all your readers. Looking forward to hearing about the Happylanche

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