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”.






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.






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.

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.

Independence Day

I’ve got a war of independence raging inside my head. This is a problem of my making. We think. For some bizarre reason, and despite being a lifelong fan of ‘Our Bodies, Ourselves’, loving myself and saying goodbye to ciggies and alcohol, eating kale (OK, and a little bit too much of everything else) I’m fighting to be free from my own flesh and blood. Because I made TEF.
And it’s even more self-defeating than Brexit. I’m so over people talking about how complex and clever cancer is. What’s so smart about suicide? Because that seems to be its objective. Kill the host and, duh, we go too.
Whatever. I doubt we’ll ever get an answer to that.
If the first rule of successful military strategy is to know one’s enemy, then I’m challenged.  I’ve had my DNA mapped for mutations – apparently the more the better, and I have a longish list – less good is we haven’t yet found ways to use this to combat TEF(s).  Of course this will change, as researchers the world over dig deep into our gene pool.
General Morris (quite like the sound of that, have to say) has a simple strategy underpinned by a clear principle: we fight aggression aggressively, and we hit TEF with as much as we can from the get-go to buy time if and before recurrence, giving all those people in white coats time to nail a cure. We take each day as it comes, exercising, eating well, sleeping plenty, and using the healthy grey cells productively.  All the while enjoying and appreciating my pretty damn amazing family and friends. And puppy.
Many white coats were on display this week for the President’s Cancer Moonshot initiative. Obama announced this during his last(ing) State of the Union address, delivered two weeks before my seizure in January this year. Solving cancer is right up their on the Big Prizes teasing the world’s finest in the 21st century. But what I like about this initiative is that it seems open and inclusive, bursting with ideas and not mired in how impossible it seems to make anything good happen these days. The team running Moonshot are approachable, and keen to plug in the views of all those affected by cancer, not just eggheads.
On Wednesday there were summits all around the country to update people on progress. I went along to the NYC summit. There were two panels of seriously impressive medics. But no patients. Being the shy one, I spoke of course, making my ‘patient-power-pitch’. Check it out:   Quite a long piece and yours truly doesn’t figure until towards the end.
Power. That’s the word I ruminate on every day as I run through my mental checklist: am I doing everything in my power to combat TEF? Am I on top of the latest research? Trials coming up? Questions for my neuro-oncologist? Mobilizing my peers to realize our collective power for mutual benefit? Am I thinking clearly, creatively and effectively? Am I using this to realize my potential as the Natural Born Campaigner I know I am?
Not enough. Must do more. I can’t rest but I’m not always sufficiently clear and confident to make the progress I want. I’m sitting on a draft deck mapping out my proposal. I want to create an app where people like me log what we do so we can measure our progress in relation to personal activity (exercise, diet, brain activity, supplements – all the things I know via the internet we’re doing, none of which is logged or analyzed by our neuro-oncologists).  I want to understand what effect, if any, this has on the enemy. And in the meantime, provide data – the Holy Grail of medical funding and the clinical trial model – so we get more $$$$.
Make me do it.  I must do it because I know it’s needed, I know it’s more than likely to help. And General Morris would.
A big challenge in military – or any – campaigns, is complacency. Just when you think you’ve got the referendum nailed the pesky people go vote to shoot ourselves in the foot. Right when you think your maverick blond fop and flip-flop approach to policy will secure you the highest office in the land, your BFF betrays you.
I had a very good MRI last week. No visible sign of TEF. The cavity left from the surgeon’s expert tumor  removal has closed yet further. Dr Iwamoto said this was a really good MRI.
But also, wtf.
I’m almost six months in and so far, so good. Now is the time to use the value of good news to push further forward. Kick TEF while it’s down. Check ammunition supplies, new weapons, new strategies.
My poetry partner sent me a poem by Derek Mahon that I keep coming back to. It sums up where I want to be so beautifully. The only difference is I can’t just lie here. I want to be able to say the title and to do that I have to up my game in realizing it. Perhaps it’s apt that I’m contemplating how to do this on July 4th weekend. I have so much support from you, but securing independence from TEF is down to me. Wish me luck. x
Everything Is Going To Be Alright by Derek Mahon
How should I not be glad to contemplate
the clouds clearing beyond the dormer window
and a high tide reflected on the ceiling?
There will be dying, there will be dying,
but there is no need to go into that.
The lines flow from the hand unbidden
and the hidden source is the watchful heart.
The sun rises in spite of everything
and the far cities are beautiful and bright.
I lie here in a riot of sunlight
watching the day break and the clouds flying.
Everything is going to be all right.

To Know and Not to Know

A very wise client of mine, Elizabeth Al-Khalifa, who headed up equality and human rights at the Department of Health, once told me that the key to surviving at the top of the UK civil service was ‘being comfortable with ambiguity’. This struck me as both true and peculiarly ironic in my current life, given that it came from the government department perhaps most focused on certainties.
You’re either healthy or sick. Alive or dead. With cancer or without.  The evidence-based trial system will provide irrefutable answers. Objectivity, evidence, data, and outcomes outcomes outcomes rule.. And yet… the more I delve into my condition and experience my experience, the more I hear Elizabeth’s words ringing in my ears.
I feel fine. I’m on the ketogenic (Atkins) diet. Starving cancer cells by eliminating sugar and carbs and eating only protein and fats. (Bring on the steak and salad). My energy’s up, waistline down, skin clear and eyes shiny. The electronic helmet is a major pain in the wotsit, but a manageable pain in the wotsit. The immunotherapy is a breeze, even if the hours and hours of inexplicable waiting I go through each time I wait for an infusion is an exercise in patience-stretching.
OK so I’m more tired, but that’s why we got the huge bed and the AC. And OK so I can get glum, hence the purchase of a huge ball of fluff aka Jazz, a wheaten terrier I defy anyone not to fall in love with.
So I feel fine, but am I fine?
Of course I want to know that the treatment I’m having is working.  $12K worth of nivolumab (the immunotherapy I’m taking) courses through my veins every month. Turns out we have no way of knowing if it’s working without looking at MRIs. And even then the MRI might show a flare that could be anything from the after effects of radiation to my immune systems flaring at the nivolumab, before embracing it to fight the cancer. The only indications we have of how I’m doing are things like whether I’m having more headaches, can follow the nurse’s finger as she moves her hand (I have to suppress a giggle each time as my father used to test my sobriety as a teenager back late from the pub by waving two hazy fingers and asking me to count digits. Yup, I invariably failed the test). Or my favorite, which provoked an ‘oh god’ reaction from Ed was when I was challenged to recite the months of the year backwards. Of course MRIs do tell us a lot, but it’s not definitive and not embracing of all the treatments I’m taking.
So I’m living with uncertainty. I know we are all in this club, but the scale and stakes of difference between certainty and ambiguity for me is much bigger than yours. And I’m finding navigating this terrain tough.
Frustrated by the familiar tale of the more I find out, the more I appreciate I don’t know. Unclear about how I can use my patient-power to accelerate progress against brain cancer. I’m on an uncomfortable see-saw, where some of the time I feel confident and full of clever insights into how if only the medical profession could become truly patient-centered all would be fine, or if only it would apply universal design principles and crack the hardest cancer first (rather than ones that impact on the largest number of people) and so on… and then the see saw swings abruptly and I’m met by insurmountables, like the bloody blood-brain barrier, unique in the human body, and both its most valiant protector as well as its built-in suicide bomber. Or how my own fixation on all things brain cancer might not be shared in equal measure by y’all.
Sometimes I feel that it’s contradictions, not ambiguity, that are driving me most nuts. Rest so I can get over the radiotherapy; exercise so I keep my immune system fit for chemo. Stay away from the online community to stay sane; get support from fellow travellers offering the solidarity of those in a horribly elitist club. Add to the cocktail with supplements and therapies – they can’t do any harm; keep focused on the main treatments and don’t spend precious $$ on things that are unproven and have little effect.
I’ve got to get to the top of the class. Navigate the ambiguity and see it as an opportunity to make headway. Here’s what I do know for certain:
–          We need more big bucks to crack brain cancer – one of the hardest cancers to treat, but affecting one of the smallest patient groups and therefore too often under the funders’ radar.
–          We’re in a Catch 22 where funders won’t fund ideas that have no evidence of potential, but without the funding it’s hard to explore potential, let alone secure the evidence.
–          There’s a wealth of evidence out there from the online patient community that isn’t captured or used. Because I can access knowledge of treatments, fellow patients and carers, and track my fitness online, I’m managing my health in ways impossible for previous generations.  So there’s bounty out there and I want to figure out how to get at it, so we accelerate progress towards cracking brain cancer.
My Doctor quite rightly stresses that anything I do to encourage patients to share experiences has to be easy, simple, practical.
Cancer can be inscrutable, incorrigible and inexplicable, and brain cancer perhaps the most complex cancer of all. There is a beauty in facing up to the behemoth and challenging its clever, wicked ways by saying the answer to TEF starts by putting human beings and their 360 degree oneness at the center of the plans of attack, understanding every facet of their experience, and letting mad and meaningful innovation flow.
I love the writings of John Maeda, author of The Laws of Simplicity. I can’t read this sentence without nodding vigorously: “We seem to forget that innovation doesn’t just come from equations or new kinds of chemicals, it comes from a human place. Innovation in the sciences is always linked in some way, either directly or indirectly, to a human experience.”
And I’m living it.

Cocktail Hour

Mine’s a margarita. But as with any cocktail, it has to be  just so. Combine agave tequila with a small amount of agave nectar. Add freshly squeezed lime, no pips, but some pulp.  A bit of rough. So, too, the ice. Crushed but not too granular. There is of course only one salt – Maldon – to use. This has to be crunched by hand into smaller pieces before the rim of the glass is rolled in it. For me, it’s got to be a good quarter of an inch round the edge. And the glass has to be a classic cocktail glass with a tall stem and wide rim circumference. Only have one. Sometime after 6 and before 8.
It’s not just the combination of ingredients that has to be spot on. Nor the ratio between them. The magic lies in the mix, because when it’s on target each individual ingredient stands out so much better than on its own.
Same for fighting TEF.
I’m now on so many therapies I have visions of Maureen Lipman in that ‘80s ad for BT were she praises her grandson for getting ‘an ‘ology. “You get an ‘ology and you’re a scientist!”. I get a therapy and I’m cured! If only it were that simple.
Here’s what I’ve done and am doing, four months in:
–          Immunotherapy
–          Radiotherapy
–          Chemotherapy
–          Electrotherapy
Supplemented with aspirin, celebrex, melatonin, levetiracetam (note to normal people: you can gain subconscious bonus points from consultants if you call meds by their real names, not the brands), calcium, vitamin d, vitamin b, frankincense (oh yeah – and sniffed, what’s more). Next week I finalize the additional 15+ supplements I’m considering adding to that list. Then there’s the medical marijuana to add into the mix. Oh, and I haven’t even talked about the ketogenic diet I’m following. All I need now is Tom Cruise – hang on, I don’t think any of us need Tom Cruise anymore – or Mr Bond to shake, not stir….
So my University of Life course has narrowed of late, with my growing specialism in oncology. Bit tough when I was always hopeless at science. Luckily I took the precaution of marrying into a Medic Mafia, aka the Pilkingtons. Where they help probe the finer details of a PD-I checkpoint inhibitor, I default to my historian training.
The most successful patient advocacy movement of the 20th Century has got to be the Aids lobby.  Aided (sorry) by years of dogged campaigning, the patients knew how to get their voice heard. They didn’t just craft a case and blast the medical research establishment. They tipped urns of ashes over the White House lawn. They blended a unique campaigning cocktail, while the medics blended a range of antiretroviral medicines.  The resulting cocktail has turned what was certain to lead to a swift tombstone into a manageable disease.
A decade ago, the buzzword amongst many oncologists was targeted therapies. The mapping of genes and greater understanding of individuals’ genetic make-up would inevitably lead to individual therapies for each unique patient. But it isn’t just patients who are complex. Cancer is really a name for a wide-ranging, highly complex group of diseases, many of whom have a tendency to dodge bullets and morph into new horrors, in much the same way a Hollywood action movie makes the impossible believable. Sadly, when it comes to cancer, it’s true.
Fighting with a complex array of armory that both blocks as many pathways the cancer cells seek to fight back from, as well as present strengths borne from the synergy of the cocktail mix, is a route many in the cancer world are now pursuing.
Makes sense to me. But if only they could relate it to fabulous alcohol it might sound a bit more exciting, non? It’s not for nothing I’m in PR.
In other news…
The electrodes are on. The backpack is full. The imaginatively named ‘device’ is lit. And the batteries come and go. I started Optune, made by Novocure, last Thursday. The company sent a charming chap round to run through the whole malarkey. I couldn’t actually understand a word he said, but luckily the website has lots of useful videos. Except of people I can relate to.
So the day before he comes round, I wait until everyone’s left the house. I creep into the bathroom and tentatively start shaving the little hair I have left. I discover Ed’s shaving cream. Who knew guys have it so easy? Off it came. And then, thanks to the Kardashian gels, I take a selfie. Time to bust out of the help site and seek support, encouragement and energy from the world…. via facebook. Wowee! I thought the only way to get a compliment out of you lot was to post a pic of the kids. Who knew I was Charlize Theron, or the one from Ex Machina?
One of my big fears was how people in the street would stare at me. But what I hadn’t clocked was that when they stare, they make sure I don’t see them doing it. Which is exactly what I do when I see someone looking a bit different. More importantly, I hadn’t anticipated how proud I would feel, having embraced a treatment many are uncertain of, yet which doesn’t include any toxicity. When I met Deb and Claire at the Farmer’s Market on Saturday, I found myself tearing off the headscarf, and asking Deb to film me as I walked around the market. Few starers betrayed themselves. I started wondering about how to draw more attention to my head, rather than less. Why a fake wig when my old hair was so past its sell by date? Jude – surely Damien could be persuaded to paint some dots on the ceramic dishes pressed to my skull? Let’s be proud and confident that despite whatever, wherever and however TEF tries, it Will. Not. Succeed.
Which reminds me. Another one to add to the list:
–          Psychotherapy.
Back to Stephen Jay Gould, whose writings are continuing to blow my mind. Take this: “Science is not a heartless pursuit of objective information. It is a creative human activity, its geniuses acting more as artists than as information processors.”
After all that meandering, I think I deserve a  very special cocktail.

Good for Now

My first MRI since completing radiotherapy and chemotherapy was clean…. YES.
This gives me two months to take a deep breath and relax.
The nanosecond we heard the news, a cold sore popped up on my lip. Next time I need valium or something to dampen the anxiety.
But oh the joy. Such a relief. I got so anxious I developed a twitch, noticeable only to me, on the left side of my upper lip. I feared this was a sign of tumor regrowth, even if on the wrong side of my body (my tumor is in the left side of my brain, meaning any recurrence is likely to show signs on the right side of my body). Funnily enough, the twitch has now switched off. Ha!
Now we look forward to the next wave of treatment. I tell you, I’m so cutting edge. It’s exhausting being at the forefront of cancer treatment fashion. One minute I’m infusing myself with the immunotherapy that’s turned President Carter’s cancer around, the next I’m preparing to shave the little hair I have left, in order to wear a bunch of electrodes on my head.
For years and years we’ve treated cancer with three weapons: surgery, radiotherapy, chemotherapy.  While the world’s labs have been working away at diving deeper inside our bodies to find answers to cancer cures, 78 year old Professor Yoram Palti dreamt up electrotherapy while settling into retirement in Israel. No doubt bored with not working, Palti dusted off his ideas from his doctorate days, decades old.
He told ‘Globe: Israel’s Business Media’: “My friends would sometimes ask me: ‘Why not search for a cure for cancer?’ So I did.” Inspired by an equal love of medicine and engineering, he decided to integrate electric fields with living tissue. He set up a lab at his home in 2000 and, 16 years later, has seen the Phase 111 trial of his therapy for people newly diagnosed with brain cancer, like me, halted because its success meant everyone on the trail should be offered the treatment.
At a basic level, how it works is that I get to wear a backpack that feeds electrodes attached to my head. These electrodes carry highly charged particles that create an electric field and attack brain cancer cells. Specifically, they block further division of cancerous cells in the brain. So this is proven to extend the time between diagnosis and recurrence. This we want, as when recurrence happens, it tends to narrow the time window to act.
My neuro-oncologist – fabulous Dr Fabio Iwamoto at Columbia – said the medical community thought this was bizarre… until they saw the data.  Now it’s thought that it will soon become the norm, alongside surgery, radio and chemo.
Closer to home, what it also means is that I’m going to be bald with great white pads stuck to my head for the next -nine months. Plus I’ll grow a sort of 2016 Met Ball techno-tale, in the shape of a big electric lead that feeds into an 8lb backpack full of batteries that will help shift those pounds. Definitely designed by engineers rather than fashionistas. Come to think of it, if only I’d known the theme of this year’s ball ahead of time, I could have challenged the world’s designers to design head gear for Optune that will encourage people to wear it.
The company is coming round next week to show ‘my carer’ how to shave my head and fix the pads and ‘arrays’, something that needs to be done twice weekly. I’ve requested an evening appointment as something tells me Tess and Emma might be useful here. Not that Ed isn’t the most caring partner in the world. But I’m thinking the skills acquired by teenage girls in the hair and make-up department might enable them to demonstrate their particular expertise in a way that complements his support and that delivers the best possible care to my poor beleaguered scalp.
The online brain cancer community is charged/buzzing/literally electric (oh dear, bad puns, but I can’t resist… talk about a gift horse) about how to wear this contraction. Did I mention I’ll need a special cooling pillow from Bed Bath & Beyond plus fan at night, as it generates heat? Oh, and this also means wigs are ruled out…
But what really did it for me was when someone online relayed their experience of being accused of being a suicide bomber when on public transit. Imagine a large electric wire leading from a backpack (containing batteries with flashing lights and alarms when things get too hot – like on the NYC subway in summertime) to a head with electric pads on it… put like that perhaps it’s not unreasonable. This provoked an outpouring of similar tales online, with responses that were strangely practical and solution-oriented, unlike mine which was to guffaw in a macabre kind of way.
Some people make cards they hand out to those staring at them, asking for their prayers, not their fears. Or explaining they have brain cancer and this treatment is a GOOD THING.  I think I’ll wear earplugs.
In between feeling in awe of the creative thinking behind this treatment, and relief that its high cost is all covered by our insurance, and dodgy humor at the idea of wearing this contraption, I feel… well. Excited and terrified in equal measure. This is a notable new chapter in the brave, mad, sane, cumbersome and confusing journey I’m choosing.
Next time I’ll tell you all about medical marijuana. Much easier for my head. Ha!

Chapter 1

January 23rd, 2016. Around 3pm. In the Catskills. Not enough snow to cross-country ski, so let’s go for a hike. Me, Alex, Gretchen, Janet. We’re walking up the hill and I can feel myself more breathless and somehow – intangibly – different, to how I normally feel on a walk like this. We’re nearing a sort of cross-roads of paths, and the conversation turns to whether we’ll continue or go back. I’m just not sure. I want to keep walking but I don’t feel right. But should I push myself on or urge a turn back? I have to say something but I don’t know what to say. I’ll start and then it will be clear. But I can’t form the words I’m not sure I want to say. Just sounds. I can see their faces, their increasingly concerned smiles. Janet looks at me encouragingly, but with a puzzled look: “Just take your time, Jess, and try again”. I try to breathe calmly, control slipping away like sand in an hourglass.  I can feel my arms stretched out, being supported. Then I’m out.
I open my eyes and there’s Eric, Josh, a crowd of friends, and a small vehicle. Everyone’s being very calm. So I am too. But I know something has happened to me. I don’t know what’s going on but Ed’s in the car so I’m OK. The cheery paramedic sits by me chatting away, just enough to stop me thinking about what’s happened, but not enough to really engage me. I know I’m still on Planet Earth but a tectonic plate has shifted somewhere.
January 26th, 2016. Middeltown. I undergo a five hour operation to remove a grape-sized tumor in the left parietal section of my brain. We know it’s a primary tumor, meaning it hasn’t originated from elsewhere.  My fear that an MRI would find me riddled with cancer from head to foot is set aside. But a week or so later, once the pathology comes through, we hear it’s an aggressive, malignant tumor. We also know that its location, size, and good surgery are all in my favor. We tell the kids and I sense I’ve got my gang behind me all the way. The Guardian tells Ed to take all the time he needs. FleishmanHillard, who I’ve spent less than a month with, are instinctively and unbelievably adult, empathetic, generous and caring. My mother asks Ed how long he can take to care for me. He answers: “I’m here for the duration”.
I’m treated at a brand new hospital – Orange Regional Medical Center – which pleases me, negating my fear of hospital super-bugs. I’m lying in a luxurious ICU room, with Ed in a 22nd Century Parker Knoll chair beside me, either watching the bigger-than-we-have-at-home TV selection, or gazing out at the Catskills outside. You won’t believe the care I get from the nursing staff. How are they so genuinely lovely, even while performing really horrible unmentionables like fitting catheters?? As for the machines. I’m floating aboard a magic carpet, masked as a state-of-the-art bed. It carries me off to mushy marshmallow sleeps, induced my anesthetic and fed by regular intakes of oxycodone. My magic carpet can even detect when a part of my body hasn’t moved, compensating by moving the relevant part of the bed, thereby avoiding bed sores.  Mmmmm.
Our friends are worried about me having brain surgery outside of the City, but it’s dangerous to move me. Andy Postman calls his former college friend, a noted neuro-surgeon who works somewhere upstate, for his advice. Dr Jeffrey Oppenheim answers his call: “You’re calling me about Jessica Morris? “That’s who I’m scheduled to meet in a few minutes.”  Serendipity is alive and well and on my side. I get excellent surgery from our friend’s friend who describes the difference between healthy brain tissue and cancerous as being like looking for vanilla in a jar of mayonnaise. Later I find he’s performed a really good surgery – what is known in the medical lingo as a ‘full resection’. TEFs like mine grow with microscopic tentacles, which is why additional treatments are needed. But still – the surgery was a literal life saver.
I haven’t written Chapter 1 before because this was all unplanned. The blog grew from the dual need to coordinate the overwhelming amount of support offered, and our desire to share updates on my journey with you. At first, Ed emailed family and the friends who’d been with us that weekend, but then more and more people contacted us and so we wanted to find a way to keep people up to speed.  But by then we were onto Chapter 2.
In a couple of hours from the here and now of me typing this blog today, we get on a flight to Chicago for the weekend, thanks to the incredible generosity of Ed’s sister Karen. It’s our family reward, a weekend off from the narcissistic, self-absorbed and attention-grabbing TEF.  My next post will start with a new round of treatment, with January 23rd very much behind us.
So, many of you are owed Chapter 1. But Janet, Alex and Gretchen’s versions would be very different. While I saw my eyelids close, they saw my eyeballs roll. They witnessed a seizure, with frothing and all sorts of yuk. They kept me upright, and saved me while getting emergency help. And as Ed stayed with me through the surgery and recovery, they took care of our kids – Janet and Josh coping with Emma and Tess and manifold homework/test requirements; Gretchen winning Project Runway for morphing Emma into Emily Dickinson for the Waxworks Show – allowing me and Ed to somehow start to come to terms with the split-second, door-sliding, good-bad, up-down, curve-ball-heads-tails what??
That my life suddenly morphed into.
And what a life. Daughter of Bill and Liz – or Bliz as I like to call them – who are, as I type, somewhere over the Atlantic flying back after a two week visit – who I love beyond anything, anywhere, ever. As I do Ed, Felix, Tess and Emma. And my siblings, their kids, my wider family, my friends. Jaez I really didn’t plan to get corny, but writing about how TEF first made itself known brings a big (non-cancerous) lump in throat.
Chicago is our prize for getting this far, in such good form.
I was at a breakfast meeting yesterday for The Osborne Association, courtesy of Wesley Weissberg and David Goldberg. Go google if you haven’t yet had the pleasure of knowing about this outstanding organization. At the breakfast, one of the speakers said something that really resonated with me: “Having family and support around you is incredibly empowering”. They were talking about people who are incarcerated. TEF wants me to be its prisoner. The fact that I’m not is in large part because of you. Whenever I get glum, I see someone. I interact, talk, think, feel.  But it’s more than that. It really is empowering. Every interaction generates energy and motivation and ideas and happiness. I come alive with you. I feel well, alert, intelligent, and with a confidence underpinned by a steely-eyed determination – nay ruthlessness – behind my smile. I’m fighting fit.
Bring on the next Chapter.

Done with Zapping

We’ve got a family text thang going. The other day, Emma, who was away with friends skiing in Colorado, sent a text saying she’d had a dream about her grandfather Tom, Ed’s dad. Felix replied saying he’d also dreamt of Tom. And I felt very odd, as I’d been thinking about him a lot also.
Tom was an intoxicating powerhouse of a man. A medic specializing in treating diabetes – a pioneer of lap band surgery – brought up in Germany by a German Jewish father and English mother. They moved to the UK in 1936, when he was 15, swopping his father’s last name of Berend for his mother’s – Pilkington. He was sent to boarding school without a word of English. I remember asking how on earth he’d coped with that. He’d looked surprised at the question: “It wasn’t a problem – why would it be?” he had answered, in his impeccable London English.
Tom’s parents were musicians, and he an accomplished violinist. He and Pam, Ed’s mum, took us to the opera many times.
I, too, grew up in a musical household. Even when I was a hard-partying South East London teenager, I still got up at 8.30am on a Sunday to sing at St Alfege’s without a word of protest.
Throughout the course of my radiotherapy, I’ve listed to jazz, blues, rock, pop, soul, reggae, hip hop… kind of you name it. But no classical.
So when I was pondering what lucky composer would fill my head for my last day of radiotherapy on Monday, my mind lept to Tom, to classical music and to his favorite opera.
There was only one contender. I jumped up onto the gurney, pulled that mask onto my face. Closed my eyes and kissed goodbye to the zapping as the Ride of the Valkyries blasted my earways.
This is not about Star Wars or Apocalypse Now (even if my allegedly educated children think so). It’s about me maximizing my not inconsiderable strength. Staring TEF down for as long as it takes.  And telling it to bugger off to Valhalla on a one-way ticket.
Wagner kept going (and some). Me too. With radiotherapy over, the next act kicks in. The immunotherapy infusions continue (third one yesterday) and soon I will resume chemo, on a five-day a month intensive schedule. The big one to get our heads around is the electrotherapy. If you want to show sympathy and get creative, google Optune, made by Novocure. Somehow  I’m going to figure out how to wear this extraordinary contraption. The electrodes have to sit tight on my head and generate heat, making wig-wearing tricky. Which is sad, as one the fabulous Carol at NYU Radiology only went and bought me a wig! See pic. I sort of hope that when my real hair is allowed to grow back, it might look like this…(this is me trying to take a selfie a la Kim).