It’s taboo…

Our eyes met across the crowded room. At first a quick glance. Then another. Soon a stare and a nod. When the others stopped talking, he sought me out and asked if he could give me a hug.
Taboo of the Black Eyed Peas, Native American, covered in taboo tattoos, and survivor of testicular cancer, was on the panel for the launch of the Biden Cancer Initiative this week.
A friend of a friend used to work at the Cancer Moonshot, Obama’s creation with Biden at the helm. Anyway, said friend of a friend wangled me an invite to the launch of Biden’s initiative.
So I’m sitting in a fancy room with around 40 people in suits. Medical experts, pharma giants, goliath cancer NGOs.
They’re all wearing suits. I’m wearing my Optune electronic helmet.
I knew that headgear had uses other than fighting TEF.
Taboo could see it. After the proceedings, we made a beeline for each other and he asked for a hug. That I can do.
But there was another guy in the room I wanted to meet. I joined the line, hustled a little. Deep breath, be brave. “Hi Mr. Vice President, I’m Jessica and have what Beau had. I’m so sorry he didn’t make it.” Yup, that got me a hug from MR JOE!! I went on “I’m doing fine and involved in setting up OurBrainBank, a whole new approach to moving glioblastoma from terminal to treatable, powered by patients. It so chimes with what you’re saying is needed – collaboration, a sense of urgency – I’d love to share our thinking”. Now those twinkly eyes focus and widen. Yet another hug and then, with his arm round my shoulder, he beckons to Greg Simon, President of the Initiative. “Greg! We gotta hear more about this!”
Oh yeah baby! That was Monday. What a way to start a week.
It’s broken a logjam inside my poor beleaguered head. Because I’ve been speechless.
I’m 15 months in, had a great MRI a while back, and have run out of words.
Fifteen months means I’m passed the median point of survival. Not that that means much – all these facts and stats have little relationship to either the here and now, or to me and my particular body and TEF.
I’m not daft enough to fail to recognize bloody good news, but. What now? It’s much easier to write a book of gloom than one of joy, right? I mean, look at the Brontes. Or Dickens. Fiction favors sad endings. Sorry, no can do at the mo.
Away from fiction and back to reality, what this means is I’m just not sure how to feel now. I’ve passed the median point of survival. What’s the next goal? And how do I get there?
I think the answer to the first point is readjusting the thinking. If I cede any ground to TEF, it’s that it’s stolen the luxury and anxiety of dreaming ahead. Long–held fantasies of somehow magically making enough money to have a second home. Or of building a career of real impact that only longevity can provide. Writing my novel. Producing my movie. Singing my song. Making my mark.
There’s a sort of liberation that comes with eliminating long-term planning. Ed mentions this in Felix’s podcast, and I’ve been dwelling on it. He’s right in that not being able to look so easily into the far future helps to focus aspirations onto today. The here and now. The making best use of the nanosecond.
I get that and, for the most part, feel it.
But how do I answer what my goal should be, and how I achieve it? I think I’ve been struggling with this because at times I’m not sure what I feel. Physically and mentally OK. Sure, tired, but if you’d been on chemo, immunotherapy and electrotherapy for more than a year I reckon chances are you would too. It’s the amorphous psyche that I’m talking about.
Which is why I haven’t been writing to you. I don’t know what to say.
I have no problem in having opinions (plus ça change, I know). But it’s being sufficiently zen and open to enable compulsions to skip the line, expose themselves, and order me to work.
Monday’s launch helped me break through. I got to connect with two incredible guys – one a musician able to command the attention and authority of cool young people all over the world. The other… don’t get me started. Just imagine if he’d been on the ticket last year.
Anyway, I got home Monday evening punching the air with excitement and new-found confidence. And purpose! And now I’m able to write again…..and writing to you helps me unlock my emotions so I can get closer to how I’m feeling. And opens the gate to my compulsions.
Top of the list is OurBrainBank. I am a Natural Born Campaigner, and getting OurBrainBank off the ground is no longer a choice, or a hobby, but a need. As soon as I take a day off of it, I drift. When I’m back on, I feel alive.
We are going to move glioblastoma (GBM) from terminal to treatable, powered by patients.
PLU (people like us) will input how we’re feeling and what we’re doing with treatments every day – or more – using a beautifully simple mobile app, designed by the fabulous duo Bruce and Ben, of sexy start-up uMotif. All that valuable data will be analyzed by clever researchers at Columbia University and the Dana-Farber Cancer Institute, led by my doctor, Fabio Iwamoto, and his colleague Lakshmi Nayak.
Medics will benefit from new insights into what combinations of treatments work best. And they can go for the prize of developing the first Patient Reported Outcome in GBM.
Partners and funders will benefit by having a ready-made pool of patients to recruit for clinical trials, massively speeding up the whole process of progressing new treatments.
Most importantly, people like me with GBM will be able to manage our conditions. Every day I can see how I’m feeling and what I’m doing against yesterday, and the day before. If I increase my exercise while finding the fatigue impossible, I’ll know to take it easier. If I can no longer pass the cute balance test on the app, I’ll know it’s time to check in with the doc.  And I can graph this over time, so I can look at it with Dr Iwamoto and figure out what meds to adjust and so forth, when I next see him.
All of us have or will be affected by cancer, if we haven’t already been. During my lifetime extraordinary success has been achieved for many cancers. But not for the really tricky ones, like TEF. It’s time for a rethink, a redesign, and a renewal of, in VP Biden’s words, a sense of urgency.
By putting PLU at the center of our plans, we reckon we can do it. And by focusing on GBM, we can put into play another great design principle: universality. If you design a doorway to take the widest wheelchair, it’s the most effective route to making sure everyone can get through any door. It follows that if we focus on cracking one of the most complex, rare cancers around, it will be the most effective way to getting solutions for other cancers, everywhere.
We hear a lot about the complexity of cancer. Yet pretty much all go through the same treatments: Surgery, radiotherapy, chemotherapy, and now immunotherapy. Electrotherapy has great treatment potential.  But we need exponential progress. We need cures.
This calls for a fundamental redesign of how we look at cancer as a whole, not just at different pieces. I’m talking about gently taking the helm from the medics and making PLU the Captain. Designing treatments and monitoring cancers around PLU, not just via medical instruments like MRIs, or objective measures like tumor size, but from what it is actually like to live with a TEF in my head. We need to press the smart brain button on our heads to turn off the sick button that allowed TEF to worm its way inside, and kick it the hell out, locking the door to prevent return.
I believe that everything I need to stay alive lies inside my brain. I’m fighting to keep my healthy cells engaged in beating GBM for me, for all those dealt the GBM card, and for everyone affected by cancer.
A while back I wrote that having a diagnosis like mine is a license to be outrageously ambitious… I also wrote that I’m not thinking about yesterday, or tomorrow, but today. Getting into that crowded room and hugging a couple of ultra-cool guys was more than just a good feeling. It catapulted me back in touch with my own, super-strong compulsions. OurBrainBank is going to be amazing. As Taboo and his band mates would say: “I gotta feeling, that tonight’s gonna be a good night. Tonight’s gonna be a good, good night.”

2 thoughts on “It’s taboo…

  1. So I have entered my comments and erased them three times already. So – my email is below. My husband is one month into his GBM diagnosis and we hope to transition to Optune when chemo and radiation are complete. Sadly his tumor is inoperable, more sad, his cognitive function has been diminished, and no one seems to offer me any hope for some kind of recovery. I am interested in OurBrainBank- I have non-profit experience (17 years)- perhaps you could use some help.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s