Novartis, a pharmaceutical company that produced most of the drugs that kept me not only alive, but growing, healing, playing and rejoicing last year, invited me to their blogger summit in New York City on May 5th.
The women and men representing Novartis at this gathering were clearly authentically engaged, inspired by the opportunity to work with these women whose lives are improved by their company’s work – and in this group, a small set of Stage IV and Stage III survivors who blog about their illness, humbled and honored by the insight available to share.
Every small push forward creates a few months here, a few extra weeks there. It adds up. And the results are powerful. Four of these women bloggers have been writing and reflecting on their illness for years – a privilege and a freedom made possible by the treatment options and high quality care available. One woman has written and published a book. Another is a Vice President of a national organization to support women living with advanced breast cancer. Still a third runs an international nonprofit which funds start up research ($40,000 annual grants) in treating metastatic breast cancer.
When we meet, we immediately begin sharing like reconnecting lifelong friends.
“After diagnosis I went through what I call my REFORM period, you know, when I tried to drop all my bad habits,” she says with a cocktail in hand, “but then I just realized I’ve got to live as me.”
Around the dinner table the bloggers bond over shared experiences.
“It’s hard to get people to understand what I’m going through. I’m a sick person masquerading as a healthy person.”
All heads nod. I’m nodding, too, despite my bald head. (I’m the only bald survivor in the room.)
I ask my sister-survivors to define “sick” for me. Did they mean that they feel ill or that their prognosis is grim?
The chorus from the table is that latter. We all feel good. We just know that given current treatment options available, we are all going to die from this disease.
We laugh and cheer. We honor each other with respect and careful listening. We share tips on managing alcohol and chemo.
Almost as a case in point, one of our Novartis leaders gushes next to me about how inspired she is by our optimism.
I know the emotion she’s catching, the sense of sunlight and spring breeze that floats among us at that dimly lit formal restaurant table.
There is a centeredness to each of us which clears the air of the usual social anxieties. We are women who have unfolded the prospect of our own death and walked into it. We wear our awareness – a heavy cloak that dampens all the social crap that usually clouds the air between people. And when we have the time and space to be still with each other, the air between us becomes clean, light, uplifting and filled with life.
The experience of wearing this cloak is different for each of us.
For the women heading up national non-profits, I imagine the cloak grounding them, providing weight to their step and measured thinking about their path forward.
For some of us the cloak can be a shield, a protection against misplaced priorities and pressures. Shedding my ego fueled concerns before learning to wear my own death, felt precarious, fragile and dangerous. Vulnerability felt like a raw open wound, skinless flesh.
The embrace of death swaddles me, calms me in my own soul and body. It keeps my gaze focused on life and love at a present local moment.
It’s like optimism without the frenzied hunger of hope. It’s like gratitude without the beholden thank you.
It’s the exaggerated slow dip and pull of a spoon filled with incredible Tiramisu from your mouth.
Ich geniesse the act of living.
It’s a heightened awareness of the capacity for light, love, joy, connection, beauty, sorrow, pain and pleasure we are given in this world – and appreciation and gratitude for our humanity.
I like the security of this weight. I am content to walk with my sight on close horizons. There is plenty of beauty in this space. The laughter in response to my 10-year old’s humor. The depth of friendship and admiration with my lover, my spouse. The carefully hidden pride and wonder at my daughter’s emerging adult self.
So when my last PET scans results showed, for the first time, a pretty uniform response to my latest treatment, I took pleasure in the joy that result and the following descending tumor markers brought from my friends and family.
But I held tight to my cloak. It’s a data point and confirms my plans for the summer will most likely hold firm. But the horizon doesn’t shift much. The path does not change course.
There’s a strange isolation I feel in the joy I watch spread among my friends.
But then there were a couple of strange flappy arm and leg events that I knew would have to be reported to my oncologist. It was unusually easy for me to share these episodes with her. I had the worry (brain mets), but not the anxiety.
To not grasp at hope is not to be without hope. While I walk with my gaze as present as possible, I still let the possible float – maybe I will see my son accepted into Bellevue’s International High School next Spring. Maybe I’ll watch him start his new school in the Fall of 2016. Maybe I will go with my daughter to get her driver’s license next March. Maybe we’ll finally go on that mother-daughter trip that SHE would like.
These hopes float like colorful balloons behind me, just beyond the periphery of my vision.
So the MRI scan of my brain was just another data point. Another rock on the same path. A possible detour towards the same horizon.
I held my cloak close to me and discovered that people can actually live long lives without their cerebellum. There’s quite a significant 1-year survival rate for high functioning brain mets survivors when whole brain radiation is used as treatment.
Same path. Same horizon. Just data.
I felt light when Dr. Wahl called with the results the following morning. Clear? No mets?
Wow. That’s really awesome.
And I’m damn grumpy about it. It’s another steroidal weekend where my husband’s voice is irritating in its light, velvet French smoothness. The swim suit clerk at Sylvia’s incurs my wrath for suggesting three times I’m might be happier with a more padded lap swim suit. The poor young life guard gets the steely gaze of you’re-wasting-my-life for her inane lockerroom blather. The Pizza Hut manager gets a royal F*** over the phone, which puts my son in tears, mortified his friend has heard his mother’s inappropriateness.
I lay in bed on Sunday morning, in the sunlight with my partner and friend. We talk.
Suddenly my cloak has fallen away and I’m grasping those balloons, I tell him. I’m holding another family trip, a summer preparing for my son’s big journey into middle school. I’m holding my daughter’s first teenage job and the image of driving her, maybe, just maybe, off to her first day of college in 2018.
I’m unearthed, untethered, floating and turning.
It’s just as emotionally difficult to let the horizon shift out as it is to let the horizon shift in. In my hands I hold those hopes for the future so tightly I fear they will burst with tears.
Slippery, maddening, glistening tears.
So today I will go and swim in the warm sunlight…because it feels like the color of hope.