NEADed and Blessed

I am NEAD.
Yesterday after visiting with my oncologist at Stanford in San Jose and a week of repressed scanziety – I had a PET CT Scan last Wednesday and let’s just say my perky miss Cancer self was a little crabbed than usual. Dr. B entered the new room in the new facility where I receive the bulk of my oncology services, palliative care, infusions, and psychosocial assistance. He and my other physician enter through sliding doors behind the patient visitor rooms from a bustling scene of nurses, nurse practitioners, technicians, and I imagine a scene from the 1984 movie, Brazil by Terry Gilliam, of which film writer and critic Pauline Kael wrote:

It’s like…a nightmare comedy in which the comedy is just an aspect of the nightmarishness.

An apropos description of waiting to see the progress of stage four cancer, I might add. This time, though, good news. Nothing new, nothing grew and no evidence of active disease, or NEAD. I haven’t heard those words with respect to myself in the three years since my diagnosis. Others have reported NEAD to me on their progress. I put on my happy supportive persona that I drop like an unwanted boxed pre printed drug store Halloween costume, the kind my mother would buy for me when I was seven or eight years old. The kind that left me in tears desperately wanting to make my own instead.

Admittedly jealousy and self pity aren’t unusual emotions to go away from those communications with, at least for me. And I feel selfish for those emotionally shallow responses, which I keep private and away from judgement. If the best we #lifers can get is NED, no evidence of disease, I’m just one letter away at least for today. I am blessed to have access to world class care and the love of professionals, my few friends and the small yet effective support structure I’ve built around me as I might a scaffolding around my fickle health that shifts back and forth between hating my body and giving up to short reprieves to allow me a chance to feel free of the shackles of disease for just a while.

I am certainly blessed.

An Apache Blessing
May the sun bring you new energy by day,
May the moon softly restore you by night,
May the rain wash away your worries,
May the breeze blow new strength into your being.
May you walk gently through the world and know its beauty all the days of your life.

Liesl a sister writer and reader of this blog, shared these inspirationally soothing words and hoped they would help me and others navigating cancer. In this world it’s important to remember some of the dearest gifts bear no financial cost; the dollar value does not equate to the intrinsic value. Regardless of the devastating financial costs of cancer, equally as high are the devastatingly effective cost of truly feeling alive. Words of inspiration alleviate some painfully high costs, such as disappearing friendships or my ability to travel outside of the country on a whim. Although now these seem so massively cheap and unimportant.

Thank you Liesl for sharing this blessing, although you did not ask for any credit for doing so. I still want to thank you for reminding me of why I keep writing: relatable experiences lift the eyes of others facing or looking back on major shifts to our lives, not only Cancer.

Ilene

Female. East coast transplant living in the Bay Area of California. Living with Stage IV breast cancer. Married to the coolest guy in the universe who occasionally suffers from serious depression. Love my stepsons, although I never thought I'd have that thankless job - ever! And my best friend Simon is also my cat. How I have survived with stage IV: treatments including chemo and surgery; palliative oncology; tenacity; a dark sense of humor; support groups; and my newly reinvented career as a vintage and antiques maven. Some days I miss the old me who led a well respected and well paid life as a business strategist in high tech. So much for that. I blog to simply share my experiences and my poetic approach with others who have cancer of any kind or with their care givers and those who love them. If one person at the very least finds a little commonality or a friend out in the ether tor a smile, a common nod about this experience, or even a link to assistance, then I have accomplished a small but extraordinarily meaningful goal. Go team.

7 thoughts on “NEADed and Blessed

    1. You betcha and thank you. How are you doing? You’ve been quiet for a while at least in blogville.

      1. Yeah I’m having some dizziness and headaches. Go for an MRI Friday afternoon. And the boyfriend just doesn’t get the anxiety. So the usual life of a cancer patient!!

        1. How did the MRI go? And, no unfortunately unless, heaven forbid, someone has cancer, Scanxiety isn’t something understandable. It seems unreasonable to them because it’s just a test. To us no test is “just” a test, it’s a measuring stick of our time on earth. Every scan opens up a big can of worms, apropos metaphor, that remind us of how delicate life is and how our disease changed us from people looking forward to plans, to people just looking forward to tomorrow, or to a positive outcome on an MRI. #fuckcancer

          1. I survived the damn thing. I hate MRI machines. No evidence of Mets to my brain. Dodged that bullet for now. That agonizing wait for results is like waiting for my very first biopsy results. #FuckCancer indeed. Bastard changed everything.

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