I’m on floor 10D, room 80, Brigham Women’s Hospital, Boston, MA. Feb 2020 and yes my DOB is still 7/22/2020 and yes I can bend my feet and knees up and down and close my eyes and pretend to hold a pizza in front of my outstretched arms and not wilt.
Message from Jessica
For just over three and a half years, or 43 months, or something like 15 MRIs, I’ve woken to a voice not unlike the Speaker of the Commons, John Bercow, saying ‘Order! Order! The Noes Have it!’
All those MRIs found No Evidence of Disease. Never has No been such a great sound. And its repetition almost led me to believe there really could be some sense of order in my life, despite the disruption of glioblastoma.
But the inexorable order of the disease has caught up with me, as it does with pretty much everyone with GBM.
The bugger is back.
Last Sunday, August 11, Terminal 3, Heathrow. I’m at the gate, about to board, on my phone and I sense a flicker in the vision of the corner of my right eye. Blink. Still there. I’m tired, I’ve flown from Ireland to London the day before. Today I’ve schlepped from Highbury to Heathrow with Ed and Tess and Emma. Maybe my eye is twitching because I was tired?
But I sort of know that’s not what’s happening.
Emma, Tess – get Dad. Don’t ask me why just I need him; my eye is doing something funny.
I’ll contact Fabio. I know it’s Sunday but I know he’s there for me and I don’t know what to do. Can’t find a number. I’ll email. Maybe I’m about to have a seizure. What if I board – almost everyone has gone through – and have seizure on the plane? Endanger everyone!
Close your eyes. Open and it might have gone away.
Fabio is on the phone within minutes, telling me to increase my anti-seizure pills immediately, wait for a couple of hours, and if the eye calms get the next flight.
Less than 24 hours later an MRI confirms the cancer has returned.
In a week or so a highly experienced, responsive, and father of similarly aged Arsenal supporting son, will open up my head and get the bugger out. He’s called Guy McKhann and has good books on his office shelf. Ah, the things one notices at times of great intensity (I don’t like the design of the bookshelves though…)
If he can get enough of it, the tumor tissue undergo deep analysis so that we can see what it’s made of. Some of the ingredients may match treatments used in other cancers. At the same time, some poor innocent mouse will be injected with my tumor, so we can see how the cells progress and figure out how to make this recurrence the only one. A sort of medical mouse mini-me.
Next week I’m hoping to have an immunotherapy infusion ahead of surgery. There’s some anecdotal evidence to suggest this might support the internal army’s efforts to expel the bugger.
Then surgery the following week. Probably.
It is staggering the incredible speed and quality of endeavor that is going on right now to keep me alive. I am so extraordinarily unlucky to have this thing, and so equally extraordinarily lucky to have some of the best medics in the world busting a gut to get me through this next hurdle.
Because that’s all it is. We know GBM recurs. We know it’s best to have surgery if possible. We know that the best team, acting fast and smart, with my ability to keep my psyche in gear, fueled by you…. and love for this intoxicating ether we call life… will get me through.
You can try, TEF, but you’re not getting me. I’m too smart. I’ve vacuumed so much learning about this shitty thing that I am not surprised, and therefore I’m steady at the helm. I love myself too much. I didn’t ignore the flickering. I didn’t hesitate to bother my neuro-oncologist on a Sunday afternoon. I didn’t crawl into a ball and brawl. I sucked in the life force of my family, my children who I feel so connected to, feeling the strength from Ed with every touch, and looked into the mirror.
This time it’s different. The mirror asked me, when I was first told I had GBM, if I was up to the task ahead. That it was really down to me.
This time it’s you and me. What I’ve found over the three and a half years since I’ve known there’s an evil stranger inside me is that We are going to get through this together. If you were me now, I’d look you in the eye, unable not to provide some physical comfort, and be with you. Knowing you’re not alone means knowing you are truly alive.
I’m going to take it easy, rest up and get ready for the carving, and then I’m going to write my book and make OurBrainBank work for my comrades who are batting that curved ball 24/7, and I’m going to do this knowing that the kernel of me is a good thing that isn’t done yet.
It’s the first day of a new year and I’m on it. I’m sitting in 39G in a Norwegian airbus, sandwiched between a sleeping husband and a waitress who’s going to ask her boss if she can take a week out every two months to see her boyfriend. She keeps hinting she might quit if he says no. She was chattering away to her man and I could tell she was waiting for him to encourage her to leave. But he didn’t, and now she’s playing bejeweled on her iPhone too quickly, trying to work out what she should do. She has the whole year ahead, and doesn’t know where to start.
But I do. I’m nearly three years into my new life, and I’m more focused, more confident, more alive, than I’ve ever been. Years ago I watched a documentary about posh and bex. David had just failed to bend it like Beckham (check what sin he committed that took England out of the World Cup) and was subject to the full wrath of fickle English fans. The camera followed them into a lux car where posh reminded him: ‘whatever hits you makes you stronger’.
Ah the snobbery of the English. I found myself parroting this line, aping her Essex accent, dismissing it as the sort of cliche we (us truly posher brits) see as simplistic in the extreme.
And yet. And yet I find myself full of energy for whatever lies ahead. I’ve made it this far, and I really wasn’t sure if I would. Posh was right.
I’ve come through a year that saw us bury first my maverick, enticing, deliciously difficult 96 year old mother in law, swiftly followed by the distressing demise and death of my exceptional father.
I’m flying over the Atlantic for the fifth time since this time last year. Each time I’ve watched people I love fall apart. I participated in beautiful, moving ceremonies that sought to express in some small way the contribution of both on earth. I find myself attacked by tears at unintended moments, grief hitting me with no warning. I’m comforted by the logic that points out their longevity. But it doesn’t distract from the loss.
My father was a great communicator. He often spoke in succinct, memorable phrases. When I was a young child, grappling with the growing realization that death comes to us all, he would reassure me by saying that he wasn’t afraid of death. I can hear his voice telling me this. I can see his face when he was saying it – his expression serious but gentle. His eyes unafraid to meet mine. A special expression for his child. It worked.
Last March I stopped all medical treatments for my brain cancer, on the advice of my neuro-oncologist. I’d blasted my body with two years of chemotherapy, immunotherapy, electrotherapy, together with a rich list of supplements, special nutrition, and intermittent fasting.
My MRIs showed ‘no evidence of disease progression’.
I came out of Dr Iwamoto’s office confused. Emotionally, I couldn’t equate being happy with stopping medical treatments. I had spent over two years staring down death, using every weapon I could command. Yet I was being advised to lay down my arms, even if the enemy could resurface at any time.
I could understand the reasoning. Two years of chemotherapy is more than a year in addition to the standard of care for glioblastoma. The immunotherapy I was on is unproven as a mono therapy for my disease, but the hope is that it will leave an indelible impression on my immune system – creating a memory – meaning if it is to have an impact, it would have done so already. As for the electrotherapy… the immunotherapy caused an allergic reaction in my scalp to the gel on the arrays used to stick the Optune arrays on my head. But I was reassured that I had already worn it for longer than the nine months evidenced by research.
I’ve never taken medicine unless absolutely needed, and my MRIs have – to date – been good. But stopping treatments made me feel as if I was being forced to be a passive patient, waiting for a recurrence. Glioblastoma returns because it doesn’t grow as a clearly defined, solid tumor. Rather it spreads tentacles undetectable to the finest MRI and strongest radiation. The blood brain barrier, critical to keeping healthy brains healthy, becomes a foe for those of us with brain cancer, because it inhibits treatments getting through.
What was I to do? It was beyond me, psychologically. My weeble personality was struggling to bounce back up. I tried sticking to my regime of the ketogenic diet and intermittent fasting. I tried enjoying wonderful family holidays. I tried channeling my energies into OurBrainBank. I tried seeking a part time role in the workplace. Nothing worked sufficiently strongly. I went back to see my psychiatrist. We discussed my symptoms and came up with a recipe that combined medication to lift my mood, plus a psychologist to help me work through some of my deep rooted behaviors that weren’t helping, particularly eating too much. I have used food as a way to cope with anything that seeks to swat the weeble in me, my whole life.
Just as these new crutches came to my aid, the deaths of Pam and my father hit.
And just as I sought to manage my grief, my son Felix broke his leg – while motorcycling in Vietnam.
Back to the here and now and the Norwegian airbus. I had five emergency weather alerts for New York when I woke up this morning in Essex. The flight is smooth. The waitress has played bejeweled for the entire flight. I’m clear headed. I’m looking back at a year that saw me gripped in a washing machine that just kept on and on, making me wetter and wetter, then squeezing all the strength out of me, taking away my ability for me to control things. But for now it’s stopped.
I spent new year’s eve watching a rubbish old movie, eating a very English game feast, and sensing the warmth that being with my mother provides.
I have much greater clarity on what I should do in the year ahead. And, in brief, it’s about exercising the core of why I’m where I’m at: the power I have as a patient living with one of the worst cancers that exists.
What I’ve learnt last year is that I’m not as in control of my emotions as I had thought. When I’m able to rest my psyche, my mind can heal and reset and set me once more on the path of determination.
I’m not afraid of death. I had become afraid of life. Now I realize that the language of terminal illness is a barrier. Everyone dies, so life is, by definition, terminal. When I was told I had a terminal disease, what I heard was that my life could end any minute. When I was told medics were working hard on finding a cure, I heard that there was an aspiration that at some time in the future, we may find a way to stop this disease causing death.
What I now know is that, because I feel good today, because I have no evidence of disease today, because I’m happy and loved and loving others today, then today I am cured. Today I am alive, well, and embracing whatever hits me in this new year. I can enter 2019 fired with the knowledge that the skill set I have has served me well so far, and that I want and can and will make better use of who I am to help rid the world of glioblastoma. Because the most powerful people in this story are people like me. Impatient Patients.
The weeble is standing up straight. Here we go.
I was listening to a radio show featuring a veteran of the Iraq war describing how his decision to step out of the Humvee that his best friend was traveling in led to his survival and his friend’s death. He didn’t know why he’d decided to get out. They were in a calm area. The Humvee wasn’t attacked. He chose – for no clear reason – to step out and walk. His friend stayed inside the vehicle. The Humvee drove off. The driver lost control, no-one knows why, and everyone inside died. The inexplicable nature of that moment tortured the vet. That split second decision, made without conscious thought, yet with such massive consequences. One lives, one dies.
Two years ago I decided to do everything possible, and everything impossible, to live.
The veteran who lived couldn’t cope with the hand he’d been dealt. He relived the moment from when he and his friend changed from being as one to being at the literal opposite ends of life’s spectrum. He found himself caught in a seemingly forever freeze-framed state of PTSD, unable to ‘move forward’ as we might say. Eventually he sought solace in communicating with others. He joined an initiative which brings together vets with country music artists, allowing them to express their emotions. But it was in his meetings with his psychiatrist that he found the insight that got him through. He realized he had a choice. To stick with ‘what if?’ or to move to ‘what now?’.
Blindsided by my diagnosis of glioblastoma (GBM), I grabbed every treatment I could get. I switched doctor so I could have more than the Standard of Care, even if unproven. I embraced complementary therapies, adopted the ketogenic diet, fasted twice a week, walked every inch of the park. I couldn’t help but think about GBM all the time. I saw a psychiatrist.
I’ve been reading a fascinating autobiography by Kate Bowler, assistant professor at Duke Divinity School. Kate is an expert in the ‘prosperity gospel’, a branch of Christianity that promises a cure for tragedy. Its bold central claim is that God will give you your heart’s desires, whether that’s a buoyant bank account, or wonderful career. Or healthy life. Kate’s faith has been massively stress-tested since she received a diagnosis of stage 4 cancer. She has just published ‘Everything happens for a reason’. She writes about the contrast in how she viewed her life pre-diagnosis and post: “If I were to invent a sin to describe… how I loved – I would not say it was simply that I didn’t stop to smell the roses… I failed to love what was present and decided to love what was possible instead.
“I must learn to live in ordinary time, but I don’t know how.”
It’s taken me two years to live in ordinary time. It feels good.
Over the next few weeks I will complete two years of chemotherapy, two years of immunotherapy, and nearly two years of wearing the Optune device. I am extraordinarily lucky to have the body of a workhorse, able to withstand all these drugs and more. At the same time, I’ve fed my psyche by focusing on what I can do, rather than what I can’t. I can learn about the disease. I can stare down the dire survival statistics. I can face the challenge that no real progress in treatments has been made since 2005. I can turn these realities into challenges that we will and can overcome. So when I look at the scan of my MRI from last week and I see beautiful strange entrancing squiggles, but no bright alarm cancer lights, I feel the vibrancy of life in the here and now. And when I get up in the morning and think about my day, I find GBM doesn’t pop up as the irritating alarm in the way it did a year ago. GBM will never let me be considered ordinary, but I’m starting to live in ordinary time.
I continue to benefit from constant, real-time infusions of interaction treatment from friends, family, colleagues, others with GBM. I wonder how anyone can ever survive solitary confinement. Because each interaction feeds what is left of my brain with new thoughts, new springboards that help refresh me, keep my internal dialogue alive, and help me find the right path for me today.
In just over two weeks (what is it with the number 2??) the OurBrainBank app goes live. Yes! Can you believe it – it’s really happening and it’s really bloody brilliant! We’ve built a board of outstanding human beings, spanning medical and tech experts to lawyers, marketeers, and people with glioblastoma. Check out my fellow GBM traveler, Adam Hayden, who joined us most recently and who writes like a dream https://wordpress.com/read/blogs/118032889/posts/3592
OurBrainBank is founded on the belief that if you design a treatment for a disease around the person experiencing it, you will have a better chance of meeting need. Our initial tool makes this happen by using uMotif’s brilliant app. I’ll blog as soon as we’re good to go. But the point is that we are hoping – determinedly so – to bring together people like me and Adam who are living with GBM, with people like you, who are anxious about people like us. We want to use our collective power to make it possible for everyone with GBM to live way beyond two years post diagnosis. And to live in ordinary time.
But these are extraordinary times. Technology allows us to connect, collaborate and, we believe, conquer. Charles Darwin was right on the money when he wrote: “It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is most adaptable to change”.
Which leads me to one of my all-time favorite lines from the Bard himself. Coriolanus’ mother says: “Action is eloquence, and the eyes of th’ ignorant more learned than the ears.”
OurBrainBank allows us to monitor and manage the change that GBM provokes in our lives. In so doing, our lives will morph into data, and transform again into medical currency that can fuel research and, ultimately, a cure. That is our long term goal. Capturing our symptoms is gold dust for the learned medics. But Our data is the first step. Unlocking the extraordinary power of patients is the key. People like me and Adam have learnt more about life and death in the last two years than most people will ever get a chance to. We are students of the University of Creativity in the face of Adversity. Our first step is to engage many more people living with GBM and their caregivers. From Day One, I reckon the OurBrainBank app is going to help people like me adapt, to move from supposed ordinary lives to extraordinary, and back to ordinary. To do so smoothly, effectively… and eloquently.
And perhaps to a New Ordinary.