Taking Care of Business
A 17 year old good looking guy walks into a recording studio. He explains he’s a singer. “What kind of singer?” he’s asked. “I don’t sound like nobody.”
What gave teenage Elvis the confidence to think he could make it as a singer, let alone one who was so unique and distinctive he defied categorization? Whatever it was, it helped propel him to become The King. If I could find that chutzpah and bottle it then… well, then The Evil Fucker (TEF) would really be on the run.
I heard this tale when we visited Graceland last week. We were in Nashville and Memphis for Spring Break. We checked most of the boxes: Graceland, Stax and Sun Studios, the Lorraine Motel and National Civil Rights Museum.
I was struck by how so many musicians actively seek out different genres, wanting to understand and be inspired by differences, breathing new life into their art, constantly redefining their work.
And having a blast while doing so.
That’s what I’m trying to do with TEF. Grabbing as many treatments as I can, both medical and complementary, hoping that there may some truth in the simple adage of the more the better. Hoping also that one of oncology’s current buzzwords – synergistic treatments – comes good for me.
But there’s another ingredient behind successful musicianship that Tennessee reminded me of. I want to feel good… James Brown is not alone. What makes me feel good is doing something with the shit hand I’ve been dealt in order to stare it down, for me and anyone else dealt this card. That’s why I’m determined to get OurBrainBank off the ground.
We’ve had a couple of meetings with potential partners, and I’ve spoken to some people with seriously deep pockets and/or minds (we know you can never assume the two go hand in hand, right?).
Everyone loves the concept. We’re turning GBM (the acronym for my kind of brain cancer) from being considered terminal (ie no cure yet) to treatable, powered by patients.
Everyone loves the team. My fabulous neuro-oncologist, Dr Fabio Iwamoto at Columbia University, Dr Lakshmi Nayak at the Dana-Farber Cancer Center in Boston, and Bruce Hellman, CEO of coolest start-up ever – umotif – and maker of the app. Oh, and moi.
But – and it’s an important but overcomable but – we haven’t yet demonstrated how the information we want to collect from patients via the app will enable us to make a giant leap in cracking brain cancer. Whatever we ask patients to input has to make sense to them, so it’s worth their while to use the app, and not become yet another good but insufficiently compelling-idea. So we’ve hit the pause button until we’ve cracked it we can get on with launching it.
I cannot wait.
The fug I’ve been feeling, which Elvis et al briefly lifted, persists.
This despite a great MRI a couple of weeks ago. The genetic makeup of my tumor means the chemotherapy I take is more likely to impact than otherwise might be the case. So I’m still taking it, a year since I started. The MRI showed further shrinkage of the cavity where the tumor was, which means the chemo is still doing its job. Given I’m OK with it (she says, stifling chemo-induced yawns) I’ll keep popping the pills for a while yet.
So MRI day was a very good day.
Why then the fug? I wrote last time about the longer I’m OK the more worried I am that I may be closer to the day I’m not OK. A sort of mid-life crisis massively concertinaed perhaps. I can react by getting all gloomy, or by hitting back. OurBrainBank helps me do that, so I’m finding the pause button hard to deal with. Once that’s lifted I will be so up for it. I feel a bit like those thoroughbreds champing at the bit, waiting for the gates to open.
Moi, thoroughbred? You ay scoff, but you know what I mean.
I want to get on with OurBrainBank because it’s good for me, it’s good for other patients, it’s good for anyone with cancer and that means it’ll be good for all of us. When I say it’s good for me, I don’t mean only because it has the potential to make a major contribution to sorting out brain cancer. I mean it will help satiate my need to feel I can still be ambitious. It is legitimate for me to strive to achieve, to make a mark, shift a needle or two, make some quantum leaps somewhere. I can’t bear the thought of TEF closing any doors to me. I can feel anger at that prospect coursing through my veins even as I type.
I’m a 53 year old woman with brain cancer and I want to feel like a 17 year old who can knock the socks off the competition with a totally new approach.
So at the moment I’m doing what Elvis famously talked about – TCB (Taking Care of Business) – in a flash. We’re not quite yet moving at lightening speed, but once we’re up and running you betcha I will.
X
Message from Jessica: Million Dollar Woman
I’m a million dollar woman. My surgery cost something like $130K. A year of immunotherapy infusions is $144K. Electrotherapy is $250K a year. Half way to a million and we haven’t even added in radiotherapy, chemotherapy, bi-monthly MRIs, and a bunch of supplements. Who said I was a cheap date?
I’m a Million Dollar Woman.
And a greedy one. I reckon I’m worth so much more. Back in the day, if I didn’t feel Ed was paying me enough attention, my oft articulated and somewhat wishful line was: ‘Don’t you realize that thousands would pay thousands to spend just one day with me?’. Wistful and downright dodgy. And useless. All it did was elicit a wry smile. He’s still here though, and we’re happy even without the thousands and thousands. Ha!
But feeling like a Million Dollars, staying well and fighting The Evil Fucker takes a currency far more complex than a big bunch of bucks. Oh my poor head. It’s not enough to be carved up by a surgeon, burnt by radiation, drugged by chemo and frizzed by electronic tumor treatment fields. It’s got to dodge all those bullets and deliver a positive mindset. Because what’s the point otherwise?
Here’s my recipe:
Set the oven to high
Mix together personal experience with knowledge garnered from the finest neuro-oncologists, technologists, brain cancer patients and care givers you can find
Sprinkle in more than a pinch of common sense
Flavor with large dollops of hope, belief and determination
Bake until a syringe comes out as clean as the MRI you want to see every time you enter that tunnel
Eat, enjoy, energize. And then ACT.
I’m feeding my appetite to prove my worth and triumph over TEF by developing OurBrainBank. A quick reminder: After decades of very little progress, cutting edge treatments for brain cancer are on the horizon. But none have yet harnessed the power of the very people most desperate to make a difference: patients. OurBrainBank does this by putting the patient at the center. We’re starting where patients are: online. We’re using what patients use: a beautifully simple app. We’re asking them to input what they’re doing to stay well – from diet to exercise to supplements – and how they’re feeling, including symptoms and side effects – language issues, balance problems, tiredness, nausea and so on. All that information will find its way onto the desktops of analysts at Columbia and Dana-Farber, two of the world’s leading neuro-oncology research centers. These clever clogs will pore over the data to spot what’s working best, what combinations of treatments are most effective, what insights we can gather from the reality of patients’ lives so we can improve guidance, connect patients to each other, build a community, enable patients to make better use of their meetings with their doctors, and provide a ready-made pool of candidates for recruitments to trials. And perhaps most importantly, provide insights and evidence into this patient population to unlock the serious big bucks we need to kick TEFs outtahere for everyone, forever.
If OurBrainBank is my big therapy, you’d think I was feeling swell. I mean I’m helping create something seriously special that could make a significant contribution to tackling one of the most complex and frustrating cancers around. It’s exciting and ambitious and all the things that get me going. And I think I’m doing fine physically. I haven’t had an MRI since I last wrote. Nor have I had any noticeable changes in how I feel physically. But I don’t feel psychologically that great. I think it’s because the longer I’m well, the nearer I get to a potential downturn. I’ve never been given a prognosis, and I understand that median statistics are just that, and in no way an indication of what may happen to me. Perhaps I fear not fearing TEF. Am I sufficiently prepared for the worst? Or is that a self destructive and pointless exercise? If things change, I will have more than five minutes to adjust. As a wise friend told me, instead of feeling that the longer I feel better, the nearer the moment I might not, I should feel that the longer I feel better; the longer I feel better. True dat. A few months after my diagnosis we went to see The Witch, a truly dreadful film. As the movie started my friend Jenn whispered that she was scared. Quick as a flash I responded: “I’m not afraid of my brain cancer, so how can you be scared of a crap movie?”. A flippant remark, but one I delivered without thinking because that’s how I then thought. I was clear headed and confident. Every night, those first few months, when I woke to go to the loo, I’d look at the chinks of light from my bedroom shutters and feel my belief and self knowledge that I was going to be OK.
I still feel that. But now I sometimes fear feeling it. A massively horrible, unfair thing happened to me and I rose to hit back. It’s like when I woke up in my freshman dorm room in college (or ‘first year university accommodation’ for my British readers) to find a guy stealing my camera. I was so shocked I jumped out of bed, wrapped a blanket round me (err yes, I was starkers) and chased that bastard down the corridor. I lost him, but he was eventually caught and I was able to buy a much better camera. I was shaken, but I wasn’t stirred.
The point is my reflexes are to fight back. That’s what I’m doing now, but it’s getting surprisingly harder and more complex a warpath the further along I go.
TEF is stirring me a little of late. I can see it in the way I’m not pushing myself to exercise as much as I was. In the way I’m indulging in sugary treats or the odd carb every now and then. The sin of over-eating has been the bane of my life. It took me far too long to figure out what was always staring me, literally, in the face. When I start to feel a bit wobbly, I eat. The difference now is that I understand the power of the confessional, and you, lucky reader, are my Pope. By opening up and hinting at my sins I can feel ablution washing through me.
Here’s another recipe. This one is for getting Back On Track:
Dress well.
Apply make up.
Tie head scarf.
Add appropriate ear-rings.
Walk Jazzy
Think.
Revise TO DO list and Get On With It.
MAKE OURBRAINBANK HAPPEN
I know I can. After writing this, I know I will.
I’m a Million Dollar Woman, after all.
Thank you, dear friends
Message from Jessica: It’s all about me
I bet if I took a straw poll, more than 80% of you would have had some sort of psychotherapy at some point. There’s typically a moment when you have to spill the beans, so to speak, of what’s really going on inside your psyche. To dig deeper, set aside what you think you know of you. And in doing so, the therapeutic value of lancing the boil is immediately proven. As you grimace at the check, you also acknowledge that you are different in some perhaps indecipherable way, to some uncertain degree, with indeterminate consequences.
Cancer got inside my head in a way no shrink of whatever hue could. 2016 was a year of shock, regularly fueled by intensive treatments. I completed six weeks of full-on brain radiotherapy. Nearly a year of chemotherapy. Same of immunotherapy and electrotherapy. I switched my diet to exclude all sugars – cancer’s food – bought the best pup ever and got to know every nook and cranny of Prospect Park. I guzzled a handful of supplements with breakfast and dinner daily. I stuck needles (good ones) in all sorts of places. I slept. And slept. We hosted a dizzying array of friends and family, dined off extraordinary feasts delivered by Brooklyn’s best. The flowers, the gifts (I still snuggle under a cashmere delight of such wonders no words can convey), the cards and the visits kept me up and away from the Danger of Depression.
2016 was dictated by TEF. Everything I did stemmed from it. It took center-stage in my life in a horribly dramatic way.
2017 sees me – the full me, not just the sick bit in the upstairs department – tentatively getting back into the driving seat. I’m looking at me and I am much more than a bunch of sick cells.
First, though, I needed to pack 2016 away. To do so, I wanted to look at the physical location where TEF first made its presence known. I wanted to pay homage to that moment, and to the instinctive and unfettered love and support shown by my friends who were there on a hillside in upstate New York where I collapsed a year ago. They kept me upright as I shook and frothed and rolled my eyes and god knows what else. They gently led me down the mountain top, guided me into a vehicle, using calm and loving tones, keeping my rising alarm at bay.
We returned to Beaverkill with the same friends a couple of weekends ago. With no set plan in place for Saturday morning, we found ourselves intuitively coming together for a hike to The Place. There we smiled, hugged, chatted, remembered. And replaced a traumatic, unspeakably horrible memory with one of collective friendship. With every step away from the site, I could feel my psyche healing, as if it had been looking for a critical stray piece of the puzzle of repair.
Now to 2017. One year and one week to the day later, I accompanied my brilliant neuro-oncologist Dr Fabio Iwamoto and Bruce Hellman, CEO of extraordinary UK start-up umotif, to present thoughts to a global team at the forefront of healthcare and technology, on how we can massively accelerate progress to a cure for my kind of brain cancer.
Here’s the thinking. What I have is very rare, and very aggressive. What’s the solution? Seriously large research money for new treatments. The challenge? Funders like to fund treatments which are likely to succeed. The safer the bet, the better. So we’re in a Catch 22: without evidence we can’t get funding, and without funding we can’t get the evidence.
I’d asked Dr Iwamoto what was needed to crack brain cancer, and I was pondering this funding gap. We had to find a way to get evidence.
Meanwhile, I was madly googling online for advice and ideas and support from fellow travelers. What I found was a traffic jam of facebook groups, blogs and message boards packed with patients and caregivers. The range of different advice offered by different doctors, and the huge spectrum of other treatments, from complimentary therapies to different diets, and so on and so on…..In other words, a vastly differing array of experiences documented solely online. The only common factor was the chasm between patients and doctors. Where doctors are understandably loathe to recommend anything that hasn’t been proven, patients like me are operating with a very different criteria, ie as long as it doesn’t harm me, the absence of a cure means ‘I’m up for it’. And whereas online patients are posting notes often more than once a day, their doctors only get to see them sporadically.
Wasn’t there a way of combining the two? Of documenting what patients are doing to treat their TEFs in a 360 degree way, from their perspective, at least once a day? Thereby providing a fuller picture and – critically – a mountain of as yet untapped data that can then be analyzed to understand what combination of treatment works best, building a more robust base of evidence and insight into the patient community that one hopes will give greater confidence to potential funders.
One other point. If you look at cancer as a whole, research funds tend to go to those cancers that afflict most people, and/or are easiest to treat. Seems to me this is a poor way to tackle the overall condition. I used to work with disabled people, and we’d seduce businesses into seeing disability as a business issue by arguing that if, for example, you design your buildings to fit the widest wheelchair, it’s the most efficient way to make sure the doorway works for everyone. Move to cancer – doesn’t it make sense to tackle the most complex, most aggressive and rarest one first? Wouldn’t that be the quickest and most efficient way to secure better treatments and outcomes for all those with cancer?
Bruce and Fabio are designing an app for people with my kind of brain cancer called ‘OurBrainBank’. It’s designed around the patient, not the app’s capabilities to collect data. We think we can make TEFs treatable much more quickly this way. And the whole enterprise is being powered by patients.
Oh yeah. More on this in future posts.
That was last week. This week was MRI time. The usual scanxiety kicked in a few days ahead of my 8am Tuesday appointment in the bowels of Columbia-New York Presbyterian. I am very lucky not to have to wait for the results. Soon as I’m back up to the 9th floor where neuro-oncology lives, Dr Iwamoto comes to see us and smiles. Ah, the relief. I cannot begin. He shows us the images. Pretty much unchanged from the last scan two months ago: the cavity vacated by TEF is tiny, and the lightened area hasn’t really shifted, confirming Iwamoto’s view that this is scarring left over from the radiotherapy. If it was suggestive of TEF it would have grown since the last scan.
I’m to continue with two more chemo cycles, taking me up to a full year. I’m a little anxious about stopping, as, presumably, it is impacting positively. But there’s no evidence it can impact after even 6 months, let alone a year, so there’s no strong case to continue. Equally, the toxicity of chemo means it can create problems in the future. (When the doctor started talking about long term problems I felt happy! I might have a long term!!). And the cumulative effect of the chemo is making my tiredness seriously boring.
I’m also to continue with the immunotherapy, a checkpoint inhibitor called opdivo/nivolumab, for a further year.
Meanwhile, labs the world over are feasting on cutting edge treatments to land the next big step in cracking brain cancer. It’s been years, at least a decade, since we had any major advancements. Cross everything we get a breakthrough soon.
So all of this is what I’m fixating on now. Not last year.
As I watch the most powerful person in the world conducting himself in the most bizarre fashion, feeding on the oxygen of publicity that must, surely, lead to political suicide at an as yet unknown moment, I turn the outside world off. I’ve kicked TEF out, both literally and psychologically. I hope for ever, but certainly for now. I’m good – very good – for now. And that’s all any of us can know.
The Beaverkill walk helped seal the end of last year. A great day, topped off with a glass of champagne before dinner. As I took my first gulp, my friends morphed in front of my eyes into a flashmob, jettisoning me back to those ’80s student days and my love of dancin’. Go WHAM!! Chloe – I will always love you for this. I dare you to resist George and Andrew as I sign out for now and get back to focusing on me! RIP George. You and Andrew may not have been the most sophisticated lyricists, but you got me.
Wake me up before you go-go
Don’t leave me hanging on like a yo-yo
Wake me up before you go-go
I don’t want to miss it when you hit that high
Wake me up before you go-go
‘Cause I’m not planning on going solo
Wake me up before you go-go (ah)
Take me dancing tonight
I wanna hit that high (yeah, yeah, yeah, baby)
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2016 Round-Robin
Message from Jessica: 2016 Round-Robin
In a few days I’ll be sitting on my dad’s loo, fingering his books on the little shelf he built, just the right height and size to fit a perfectly curated selection of reads for a morning toilette. I can recite by heart the titles of many of the long-standing scribes. A Murder of Quality by John le Carré, much better than any Night Managers. The Rose of Tibet by Lionel Davidson (although I’ve been meaning to ask dad to swop this for A Night in Wenceslas, a far superior effort in my view. Seems I spend so long reading I forget to ask). The 5BX exercise routine, devised for the Royal Canadian Air force in the ‘50s. And then a more recent addition: Simon Hoggart’s compilation of round-robin letters: The Cat That Could Open The Fridge: A Curmudgeon’s Guide To Christmas Round Robin Letters.
Here’s mine. Ed has had an excellent year, producing a steady stream of important articles on such light topics as the death penalty, racism, poverty, sexism and generally any subject where human beings in the world’s most powerful nation are treated extraordinarily badly. It’s like starting every day with a cold shower – good for you! Felix had a wildly exciting gap year, lifting India out of poverty single-handedly, before moving to London where he acted as Steve Jobs for internet start-up uMotif. Now he’s shining at the highly progressive Colorado College, nestled in Colorado Springs, home to a major military establishment as well as more Churches per capita than any other city in the US. That’s what I call diversity. Tess is fulfilling her mother’s desire that there be only one letter on her report card, as she embraces her senior high school year with unbridled optimism, filling out college applications expertly, speedily, and generally being an absolute joy. It’s just the way she does anything I ask so immediately, without question, and with such a delightful smile on her face. The clothes that get picked up off the floor instantaneously, the refusal to wear any of my latest purchases, use my make up or wear my earrings. Emma also. Emma has joined Tess at the finest high school in the city (Beacon) and is already excelling at all aspects of the curriculum, including Friday night sleepovers at ours, which require Ed and I to don aprons and produce restaurant-worthy brunch offerings on Saturday mornings for scores of charming young women. Ah, the neatly made beds they leave behind them. They do all say thank you…. Perhaps the star of stars, however, is Jazzy, a wheaten terrier who arrived to brighten our lives, jumping sweetly over furniture to embrace us, showering us with dog kisses, while simultaneously chewing our most precious Alvar Aalto chairs and leaving indelible wee stains all over the taupe carpet. It’s not her fault that the wee stain doesn’t match the carpet, is it?
Back to the loo.
We are headed to an East Coast boutique hotel for Christmas, aka my parents’ house with the aforementioned loo. Stone House on Mersea Island is an oasis of calm, delivered through immaculate design, impeccable home cooking, constant hot water for proper baths, and really fluffy towels.
And a couple of the best human beings on this planet.
I want to pay tribute to my parents. This year they’ve had to grapple with the full spectrum from their children. At one end, my fantastically talented sister Frances shattered many a glass ceiling by becoming Director of Tate Modern. Richly deserved, and as her sister I’m allowed to say, a little overdue. Then my brother, navigating a change in family situation with care and patience, while renovating an extraordinary property on an impossibly beautiful spot in Devon. At the other end, my diagnosis.
Not many parents past their first flush of youth would get on the plane, come on over, cook and clean and garden and shower us with persistent and consistent strong and tender love.
And wow has it helped.
Last Friday I had my MRI. I was warned I wouldn’t be able to get the results until Tuesday this week, so had prepared myself for the wait. My usual ability to lie in the donut and focus on a James Bond red tunnel, with me coordinating the SAS zapping of TEF suspects, was hard to conjure up. I was so tired – the main side effect I get from ongoing chemo and schlepping up to Columbia New York Presbyterian from Brooklyn – and the gurney so comfy I almost nodded off. Even with the drilling pounding my ears.
But Dr Iwamoto isn’t any old doctor. He came and found me and gave me the headlines, and showed me the images. The cavity where my tumor was has shrunk yet further. He smiled. I smiled. Ed smiled. This was a bloody good result after a bloody awful year.
Back to the round-robin. Jessica began the year with an unexpected seizure, leading to the diagnosis of one of the most rare and aggressive of all cancers. She ended the year with no sign of it, nor of the 60+lbs she’s shed along the way, adopting the ketogenic diet, intermittent fasting, various supplements, and addictive daily dog walking around Prospect Park.
But more importantly, she and I have come to the end of the year knowing that we’ve achieved all this by drawing on reserves and replenishments of that most potent fuel. The one my parents have showered on me throughout my life, even when I’ve driven them nuts with bad behavior (so if teenagers never misbehave they’re just boring adults, right?!), working in a completely different field to them and my siblings, and – worst sin of all – by moving away. Despite all this, they’ve powered me with constant, unbridled, uninhibited and unconditional love.
So when people tell me how well they think I’m doing, as they often do, I wonder how I am able to. I’m actually, crazily, happy. Because I have very firm foundations. I’ve been loved all my life and I’ve given love all my life. And I love life. So as we end this tumultuous year, I see 2017 as the year I can inch from the psychological emergency room I’ve been in since January, to a more public ward. One where I can put to good use the knowledge and experience garnered this year. You’ll just have to hang on for the next post to hear more. But I’ve got some bloody good plans he he. And they’re all powered by love.
As my school motto stated: Amor Vincit Omnia. Sitting here, having not had a single day’s illness all year, and still flush from my fab MRI result, I can say – you bet. Love does conquer all.
Thank you for reading. For supporting, for communicating, for giving, for loving.
To you all, from me – a very Merry Christmas and a Happy New Year.
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Fits and Starts
I had a seizure in Prospect Park two weeks ago. And another in the ambulance on the way to hospital.
The medical community talks about ‘auras’: how people often sense a change in the air before they have a fit. I was feeling tired anyhow, and had forgotten to take my anti-seizure medication the night before. I’d doubled the dose in the morning to make it up. Then set off to walk across Prospect Park to have brunch with friends.
Still tired (but when am I not?), we started walking back, and it was when we hit the gorgeous boathouse that I began to feel those old teutonic plates shifting again.
And the words… a disconnect between what I wanted to say and the noises I uttered.
Ed was there and caught me, and our friends Steve and Ria sorted an ambulance. A passing doctor explained the importance of placing me on my side on the ground, ensuring I kept my airways clear.
I came to in the ambulance, outraged at the incompetence of the man trying to save my life.
Every two weeks I get Ivy League nurses at Columbia injecting me, so I know a good vein spotter when I see one. This guy hadn’t even completed first grade. But he was trying to save my life, so I could have been a little nicer. Ed said I was horrid. He also said I kept on trying to take my clothes off. Does unconsciousness expose innate and instinctive bad behavior? No need to answer.
Home that evening, lying in a hot bath, I could feel anxiety morphing into terror stealing along my veins. Why did I have these seizures? The cancer must have returned. The clock has shifted. The hourglass flipped. The smiley performed a 180-degree flip, TEF had hit a bracket key on my human keyboard of emotions.
My insurance policy of doom and despair kicked in, ahead of my MRI scheduled for the following week. Despite a CT scan done there and then, and which showed no evidence of recurrence, I knew with that dull certainty reserved for serious shit that the weeble (remember, I’m a 1970’s kids’ toy called a weeble, that famously ‘wobbles but doesn’t fall down’) was under threat. I had to manage my expectations, hence the insurance policy. If I assume the worse, anything better would be much better than better, sortathing.
This was all so different than the first time I had a seizure, back in January. This led to my diagnosis, delivered by the completely charming Dr Andrew Chi, head of neuro-oncology at NYU. It was a stunningly stark moment that I don’t expect to ever completely process. I do remember feeling shocked at the reality, but not completely surprised, nor even devastated. The previous weeks since my brain surgery had seen me stalking my surgeon via phone calls and emails, and he had taken his time to get back to me. When we finally spoke, he’d told me I had a glioma. I was sitting on our bed looking at the spot on the skirting board where Gerard didn’t paint sufficiently thoroughly, thinking: ‘there’s a false upbeat in the surgeon’s tone. He doesn’t want to tell me everything.’ So I’d mustered my thoughts and asked him if this meant I was a goner. The skirting board was banished as he uttered “Oh, you’re not going anywhere”. Yay! Onwards! “Where can I find out more about gliomas?” I ‘d asked. Ha! The naivety. “Don’t google. I’m referring you to Dr Chi, he’ll talk you through it.”
Google told me lots of horrible things. Curiously, the same horrid explanatory paragraph seemed to show up on every article associated with gliomas over many years. Plagiarism isn’t the sole preserve of one Melania Trump, it seems. So I could tell that it was bad news, but that I would need Chi to provide accuracy, detail and, hopefully, Hope.
Which he did. He gave me my diagnosis with very specific reasons to be cheerful. Size and location of tumor, good surgery and recovery, my age and overall health. Both in content and manner, the way he delivered my diagnosis was a model of excellence.
Straight afterwards, I nipped into the bathroom in NYU’s neuro-oncology unit. It’s surprisingly clean, with grouting between the tiles that seems only to have known bleach. It was in that room, looking into the mirror, that I was first able to process my diagnosis. And in that moment to know that I was fundamentally on my own, and that, equally fundamentally, up to the task ahead.
In our kitchen in Greenwich where I grew up, we had a huge white pin board where we displayed all sorts of pictures and photographs. Somewhere on there was a piece of wood with a quote from Churchill burnt into it: “Please understand there is no depression in this house, and we are not interested in the possibilities of defeat. They do not exist.”
This surfaced in my mind in the NYU bathroom. But nine months later in Prospect Park two weeks ago, I found it much harder to grab at. During the days following these seizures, TEF licked its lips as it invaded my every moment, both conscious and unconscious. Its tentacles wrapped themselves around all thoughts of work, of home, of family and friends.
I felt myself swaying in its power, its grip tightening with every nanosecond I tried to stop thinking about it. Like a mad, attention-seeking psychopath, ignoring it was not an option. My dietary discipline cracked. My exercise stalled. My concentration diminished. Tiredness and anxiety took over. I longed for my MRI to provide the clarity I needed, to triumph over the emotions and provide a clear way forward.
And then it was ten days later, and the day of my MRI.
8am in the bowels of Columbia on 168th St. Electronic headgear was off. Earrings removed. Wishbone necklace set aside.
I lay down on the gurney, the cushion place under my knees for comfort. I twiddled the foam earphones and relaxed as the headphones were placed over my head.
The instinctive claustrophobia I normally feel failed to make an appearance, so keen was I to know whether the seizures had led to recurrence or not. CT scans only go so far….
They handed me the panic button. Wasn’t Panic Room a good name for a movie? Why the same thoughts each time, I ask myself each time.
Then the mask goes over my head, and foam pads are inserted each side to inhibit movement. There’s a tiny mirror above me where I can see a bit of my forehead. Why? Note to self-moment: ask the technicians why that’s there. But it’s so trivial I never do. But I get a small sense of enjoyment with the familiarity of the question rearing its head.
Then I’m moved inside a donut. It’s not a coffin it’s not even like a coffin it’s designed to help me stay healthy yes it is it is is stay breathing be calm you had two home births for fuck’s sake.
Why is it so goddamn noisy, like a road works has invaded my head? Note to self each time, ask the techs. Note to self each time, don’t worry you know you’ll forget and you don’t need to know. Just behave and let them do their jobs. They want the best for me I’m so lucky.
Pause half way through. Inject me with contrast. Then pummel away again.
OK you’re done. They smile inscrutably as they help me off the gurney. What must it be like to know whether the person is doing well or not and yet not be able to say? What secrets that basement must hold.
And then….. Just a matter of less than half and hour and nine floors up the elevator, along the corridor and into the neuro-oncology department. Dr Iwamoto arrives and delivers the headline:
“It’s a good MRI and I’m really pleased with your progress”.
YES
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Fits and Starts
I had a seizure in the Park two weeks ago. And another in the ambulance on the way to hospital.
The medical community talks about ‘auras’: how people often sense a change in the air before they have a fit. I was feeling tired anyhow, and had forgotten to take my anti-seizure medication the night before. I’d doubled the dose in the morning to make it up. Then set off to walk across Prospect Park to have brunch with friends.
Still tired (but when am I not?), we started walking back, and it was when we hit the gorgeous boathouse that I began to feel those old Teutonic plates shifting again.
And the words… a disconnect between what I wanted to say and the noises I uttered.
Ed was there and caught me, and our friends Steve and Ria sorted an ambulance. A passing doctor explained the importance of placing me on my side on the ground, ensuring I kept my airways clear.
I came to in the ambulance, outraged at the incompetence of the man trying to save my life.
Every two weeks I get Ivy League nurses at Columbia injecting me, so I know a good vein spotter when I see one. This guy hadn’t even completed first grade. But he was trying to save my life, so I could have been a little nicer. Ed said I was horrid. He also said I kept on trying to take my clothes off. Does sub consciousness expose innate and instinctive bad behavior? No need to answer.
Home that evening, lying in a hot bath, I could feel anxiety morphing into terror stealing along my veins. Why did I have these seizures? The cancer must have returned. The clock has shifted. The hourglass flipped. The smiley performed a 180-degree flip a bracket key.
My insurance policy of doom and despair kicked in, ahead of my MRI scheduled for the following week. Despite a CT scan done there and then, and which showed no evidence of recurrence, I knew with that dull certainty reserved for serious shit that the weeble was under threat. I had to manage my expectations.
When I was first given my diagnosis, delivered by the completely charming Dr Andrew Chi, head of neuro-oncology at NYU, I wasn’t completely surprised, nor even devastated. The previous weeks had seen me stalking my surgeon via phone calls and emails, and he had taken his time to get back to me. When we finally spoke, he’d told me I had a glioma. I was sitting on our bed looking at the spot on the skirting board where Gerard didn’t paint sufficiently thoroughly, thinking: ‘there’s a false upbeat in the surgeon’s tone. He doesn’t want to tell me everything.’ So I’d mustered my thoughts and asked him if this meant I was a goner. The skirting board was banished as he uttered “Oh, you’re not going anywhere”. “Where can I find out more about glioma’s?” I ‘d asked. Ha! The naivety. “Don’t google. I’m referring you to Dr Chi, he’ll talk you through it.”
Google told me lots of horrible things. Curiously, the same horrid paragraph seemed to show up on every article associated with gliomas over many years. Plagiarism isn’t the sole preserve of one Melania Trump, it seems. So I could tell that it was bad news, but that I would need Chi to provide accuracy, detail and…. Hope.
Which he did. He gave me my diagnosis with very specific reasons to be cheerful. Size and location of tumor, good surgery and recovery, my age and overall health. Both in content and manner. The way he delivered my diagnosis was a model of excellence.
The bathroom in NYU’s neuro-oncology unit is surprisingly clean, with grouting between the tiles that seems only to have known bleach. It was in that room, looking into the mirror, that I was first able to process my diagnosis. And in that moment know that I was fundamentally on my own, and that, equally fundamentally, up to the task ahead.
In our kitchen in Greenwich where I grew up, we had a huge white pin board where we displayed all sorts of pictures and photographs. Somewhere on there was a piece of wood with a quote from Churchill burnt into it: “Please understand there is no depression in this house, and we are not interested in the possibilities of defeat. They do not exist.”
This surfaced in my mind in the NYU bathroom. But I found it much harder to grab at it in the Park. During the following week, TEF licked its lips as it invaded my every moment, both conscious and unconscious. Its tentacles wrapped themselves around all thoughts of work, of home, of family and friends.
I felt myself swaying in its power, its grip tightening with every nanosecond I tried to stop thinking about it. Like a mad, attention-seeking psychopath, ignoring it was not an option.
Then it was ten days later, 7am in the bowels of Columbia on 168th St. Electronic headgear was off. Earrings removed. Wishbone necklace set aside.
I lay down on the gurney, the cushion place under my knees for comfort. I twiddled the foam earphones and relaxed as the headphones were placed over my head.
The instinctive claustrophobia I normally feel failed to make an appearance, so keen was I to know whether the seizures had led to recurrence or not. CT scans only go so far….
They handed me the panic button. Wasn’t Panic Room a good name for a movie? Why the same thoughts each time.
Then the mask goes over my head, and foam pads are inserted each side of my head to inhibit movement. There’s a tiny mirror above me where I can see a bit of my forehead. Why? Note to self-moment: ask the technicians why that’s there. But it’s so trivial I never do. But I get a small sense of enjoyment with the familiarity of the question rearing its head.
Then I’m moved inside a donut. It’s not a coffin it’s not even like a coffin it’s designed to help me stay healthy yes it is it is is stay breathing be calm you had two home births for fuck’s sake.
Why is it so goddamn noisy, like a road works has invaded my head? Note to self each time, ask the techs. Note to self each time, don’t worry you know you’ll forget and you don’t need to know. Just behave and let them do their jobs. They want the best for me I’m so lucky.
Pause half way through. Inject me with contrast. Then pummel away again.
OK you’re done. They smile inscrutably. What must it be like to know whether the person is doing well or not and yet not be able to say? What secrets that basement must hold.
And then….. Just a matter of less than half and hour and nine floors up the elevator, along the corridor and into the neuro-oncology department. Dr Iwamoto arrives and delivers the headline:
“It’s a good MRI and I’m really pleased with your progress”.
YES
X
I Got Rhythm
What do you think The Donald does on a dull day? Apart from something to do with abusing women. Or black people. Or Muslims. I expect he finds dull rather tricky.
He strikes me as a classic drama queen. Braggadociously ghastly megaphones, spouting offence, provocation, armageddon, and hate. Now we know he won’t get into office, but just imagine if he did and there was a quiet week. He’d go even more nuts than he already is.
Madmen need drama. Adrenaline, huge rallies, ramping up the ante with every speech. We’re caught in a whirlwind of revelations and accusations, with responses on both sides becoming ever more extreme. We’re living in a pressure cooker and there’s no sign of let up until the magical November 8th….
At least there’s a deadline.
For me, these last couple of months have seen the drama of the first half the year replaced with a sort of ‘steady as she goes’, as I live MRI to MRI. I’m over the initial hiatus, and focused on the day to day business of staying healthy, but the fundamental rhythm of my life has changed, and I haven’t quite found my new groove yet.
There are some regular(ish) drum strokes. Immunotherapy infusion every two weeks. Blood work the same. Brief neuro exam also. Pills morning and night. Chemo 5 days every month. Electronic helmet changed twice a week. No food after breakfast twice a week.
There are some developments (although I hope not of the tumor kind). I’ve now completed six months of heavy duty chemo pills five days each month. The side effects of tiredness and nausea, imperceptible at first, now make their presence known, causing me to curl up and snooze for most of last week.
But, well, yawn.
It’s not that I’m bored by all these treatments (although I can think of better ways of spending several hours in the waiting room of Columbia’s infusion center each month – hours I will never get back), but I don’t know how to construct a meaningful and – yes please – exciting life around them. And I need to. I need a sense of rhythm, a bit of Buddy Rich in my life. Something that makes me get out of chemo slumber and nausea yug and instead punch the air because I’m doing damn well, considering.
I do what I’m told. I take the pills, I walk the dog, I wait, and wait, and wait, for my infusions. But being good all the time isn’t in my nature. I used to think a useful marketing segment would be to divide people by those who, at school, would go to sit at the front of the class, and those who naturally veered to the back.
Well I’ve spent all year at the front of the class, and I can feel the back row drawing me ever closer.
I’m not going to suddenly eat a tub of ice cream, or skip my bucket of pills. But I am going to go dancing. I’m going to leave my helmet and exhaustion at home and go hit the dancefloor. And seek out friends who are so fabulously sensitive about not crowding me but please! I need the friction of friendship to get me outta here.
And I am going to construct a calendar that combines the bare necessities of my myriad treatments, with the projects I Am Making Happen. A steady beat with Whiplash moments of exhilaration.
I’m living in the moment. The one where patients like me move from being passive recipients of treatments designed to tackle conditions, delivered by saint doctors, to one revolving around me. Us. The VIPs surfing, riding, fighting – above all, living – with TEFs. What we think about what we can do to beat TEFs is what matters most. I’m not going to spout any more Stephen Jay Gould at you, but I am going to bore the pants off as many of the people treating me as I can. We are all on a quest to beat TEF, and we know the answer lies with me and my comrades – those of us dealt the shit hand.
Let’s document how we’re doing, what we’re doing, and how we’re feeling. Let’s feed those clever epidemiologists a banquet of data so rich they have to digest carefully. Let’s make that data work to get us the funding we need to knock TEF out the park. And meantime, empower everyone with a TEF to know what the choices of treatments and doctors are out there, what the best advice is, who else is out there should they wish to connect, and how we can use our very special status to get the action we need.
As I typed that last para, I could see myself getting up from that back desk, walking to the front of the class, and taking charge.
Braggadocio I ain’t. But idealistically pragmatic I am. (with thx to Gehl for that magnetic line….).
Better go dance it out.
x
The Four Letter Word
September, January, somewhere after Easter eggs and Sunday afternoons are all, for me, synonymous with feelings of mild depression, anxiety and dread. The start of school means the end of freedom.
Packing Felix off to college, Tess to her last first day of high school, and Emma to her first day of high school has worn me out. I dither around all day achieving little other than walking the dog. But I find myself clearer headed today than I have been for weeks, and I think it’s because that dreaded first day is over, and so far – touch every bit of carbon you can – they seem OK.
The start of school is now, for me, the beginning of a new effort to reshape my life as we know it. Only now – ten days since I last saw my doctor – am I able to process what I learnt at that meeting.
The headlines are good. My MRI showed further shrinkage of the cavity left when Dr Oppenheim scooped out the tumor, and no sign of recurrence.
I asked Dr Iwamoto what lies ahead beyond a two month horizon (ie my current timetable, as I have MRIs every other month). He’s always been clear that while the immunotherapy I take (nivolumab) is the strongest agent I’ve got working for me, it will ‘in the end’ work better in tandem with another agent. This could be a viral gene therapy. (Needless to say, these are all views based on my individual case and my particular TEF).
These re-designed gene virus therapies are so clever and so complex that I can’t begin to describe them. OK, I’ll have a go. Here’s one Dr Iwamoto is particularly interested in for me. Tocagen is embarking on a Phase 2-3 trial which, if these confirm the early Phase 1 results, could prove pivotal. Tocagen produces an anti-cancer drug inside the tumor itself, allowing it to selectively destroy cancer cells while simultaneously activating the immune system. What’s more, this anti-cancer drug is also partial to killing immunosuppressive cells, further powering up the General Morris Army. It will take around two years before the trial concludes. Tick bloody tock.
This moves me onto a new level of hope.
We all have to have hope, right? Even when everything’s all fine and dandy, hope rears its head and asks us to shift a gear. It dangles something in front of us to motivate us to get up and go grab a better something.
Having a disease without a cure doesn’t sit easily with my four-letter friend. And yet having and harnessing hope is crucial to overcoming the adversary of adversaries – TEF. Remember our friend Stephen Jay Gould making the case for positive thinking?
But hope works for people in different ways… partly, I think, because people access it differently. I’ve been thinking about different people I’ve known who’ve been faced with difficult diagnoses. One was my uncle Bill Foreman, a New Zealander who somehow ended up running Sully Hospital in South Wales. Along the way, and after becoming a doctor, he enlisted in the New Zealand Medical Corps only to be taken prisoner of war. He volunteered to be transferred to a camp where Russian prisoners were dying from typhus. He stayed for two years, despite contracting the disease himself.
Bill developed non-Hodgkin’s lymphoma in the early ‘70s. I remember him and Pam coming to stay with us in Greenwich, not long before he died. He’d lost a lot of weight, and his skin was a little pallid. But he had the sort of stature, sense of wisdom and gentleness I associate with those very few men like Atticus Finch. Anyhow – yes, maybe Alabama to New Zealand to Poland and South Wales is a bit of a stretch – he was a really wonderful man.
I do remember Bill saying that patients always had to have hope. That hope was part of the treatment plan.
For me, hope is about staring the enemy in the face, inviting all the shitty statistics, heartbreaking stories and beyond cruel medical and human failures associated with brain cancer into my innermost self. Let me know what I’m dealing with, because then the hope that I know I can tailor-create will be better informed, better capable of being realized, more refined, more intelligent, strategic, smart – gazillions of adjectives to describe what is for me an absolutely critical piece of General Morris’ armory.
Or as my dear brother-in-law Pete puts it, I’m using my fears as a source of energy. Maybe, as he suggests, this is moving into a Buddhist sphere, where hope is seen as an antidote to fear. Who knows (or maybe one of you readers does?). It’s what I find my mind doing.
My MRI and meeting with my Doctor opened a door in my poor beleaguered brain to let a bit of hope back in. I might regret writing this, but I’m daring to think beyond the next MRI in two months’ time.
x
Dear Reader
Dear Reader
It’s been a while. You OK? I am. I’ve shifted 40+lbs – yay! – nothing quite so delicious as getting into clothes you haven’t been able to wear for oh so long. And the resulting compliments are far more nutritious than anything Cadbury’s could cook up. Blood work is all good. Energy levels super high. MRI looming but not bugging me (yet).
Seven months in and I feel healthier than ever. This presents me with a challenge. How can I deepen and cement the solidarity I have with you, built on the empathy, interest, concern and sympathy you’ve expressed? How do I do this now we are past the initial crisis, and are into the unknown of when and if I return to that point? How do I entice you with me even while I don’t exhibit negative symptoms that you or anyone with a friend trying to evict a TEF would expect to see?
You are probably worried that I’m suffering horrible side effects from the heavy duty chemo i’m on, five days every month. Like me, you will have known people with cancer seeing their hair fall out, overpowered by nausea, unable to live in any sense normally. Perhaps you’ve known people paralyzed or traumatized by the cancer curveball hurled at them, consuming their emotional state and dictating every aspect of their lives, defining them. You might see me with my electronic headset, generating heat and accompanied by myriad wires, bags, batteries. And you may well wonder how the hell I cope with that in the summer sun. And how unbearable not to eat carbs or sugar ever, let alone zilch after breakfast two days each week.
But I was born happy. Perhaps you saw me this summer in London, or Ireland, or here in New York. If yes, you know I’m looking well. And I explained how good I’m feeling. I’ve seen so many friends, smiled and kissed and caught up, received compliments and support and love. I return to everyday life with a fully stoked heart.
Help me keep that fire burning. Here’s the deal. I will answer any question you have about TEF, how I’m feeling, what treatments I’m doing and why (and why not). You can be as intrusive and personal as you want. Or avoid all mention if you’d rather. I’ll answer honestly, even when – and perhaps especially – I don’t have an answer. Because this is my time to show you, and me, what I’m made of.
This summer I’ve played the whole cast, from mother and wife to daughter, sister, cousin, colleague and friend. Now I’m home and shedding those roles, with the liberation that being an immigrant affords. Of course this also entails acknowledging the buckets of homesickness that come from saying goodbye to those across the pond. But it also affords me the opportunity to recognize my strength. If I can move continent in middle age, build a successful business as a woman the wrong side of 50, help mould three outstanding emerging adults, and make an AAA list of friends, then WTF does TEF think it’s up to? No chance.
As I enjoyed everything that Virgin Atlantic business class had to offer (Julia H, how do you do it, darling friend?), I watched a beautiful documentary about Nora Ephron, made by her son. Here’s a woman who was so open about something so intimate – the breakdown of her marriage to Carl Bernstein – that she wrote a book and film about it. And yet, diagnosed with a rare and devastating form of leukemia, kept her illness secret. The consensus from her friends was that Nora chose not to share the news because, in Liz Smith’s words: “She was a control freak”.
It may surprise you to hear me deny I’m a control freak. Challenging, obstreperous, PITN (stands for Pain In The Neck, a name my RE teacher gave me at school), victim of verbal diarrhoea. OK fair play. But in this life I’m just as at sea as you, and you, and you. Let’s keep holding hands while we defeat the rip tides. I’m doing fine but who knows for how long. I know you’re with me. Please stay…. And ask, challenge, advise, share….
I need you.
X
