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.
You’re correct – that’s not a picture of Bertrand Russell who wrote this 10 point view on teaching, it’s my meditation mentor Richard Feynman. In my den framed is the Apple Computer “Think Different” advertising campaign poster with Richard. When I am really in a bind, I look at his photograph and ask, what would you do, Dick? Eventually I figure it out and if I test my conclusions and they are correct then go for it and keep trying until a better answer comes to me. He’s been a great mentor.
Bert’s words below, however, apply to teaching as well as more life experiences than I can think of – it, too, applies to how I view my own cancer education. I never wanted to be a cancer patient and I never wanted to be a stepmom, but now I am those things and more.
So for your edification and for the high regard I place on pedagogical philosophy that’s orders above the ordinary, here you go:
1. Do not feel absolutely certain of anything.
2. Do not think it worth while to proceed by concealing evidence, for the evidence is sure to come to light.
3. Never try to discourage thinking for you are sure to succeed.
4. When you meet with opposition, even if it should be from your husband or your children, endeavor to overcome it by argument and not by authority, for a victory dependent upon authority is unreal and illusory.
5. Have no respect for the authority of others, for there are always contrary authorities to be found.
6. Do not use power to suppress opinions you think pernicious, for if you do the opinions will suppress you.
7. Do not fear to be eccentric in opinion, for every opinion now accepted was once eccentric.
8. Find more pleasure in intelligent dissent than in passive agreement, for, if you value intelligence as you should, the former implies a deeper agreement than the latter.
9. Be scrupulously truthful, even if the truth is inconvenient, for it is more inconvenient when you try to conceal it.
10. Do not feel envious of the happiness of those who live in a fool’s paradise, for only a fool will think that it is happiness.
Thank you Bert and Dick. You’re both very much alive with me every stinking day and I am better for both of your words still available to me when I’m having a crappy day.