No Circles Here

I’m on floor 10D, room 80, Brigham Women’s Hospital, Boston, MA. Feb 2020 and yes my DOB is still 7/22/2020 and yes I can bend my feet and knees up and down and close my eyes and pretend to hold a pizza in front of my outstretched arms and not wilt.

Different nurses ask me the same questions every few hours and each time I feel obliged to point out (silently, to myself) that the US being the only place on the planet that insists on month/day/year order puts patients with brain injuries who spent half their lives with a DOB of 22/7/2020 at a disadvantage. It’s a small but irritating hiccup we have to jump – as if we didn’t have enough already.

I share a room with a succession of very ill people, a curtain separating me from them and their huge families, inevitable 24/7 TV, and in one case, with a woman nearing death, uttering continuous sobs and moans.

But that’s not the only reason I can’t sleep in my hospital bed. I have to lie with my head on my left side to avoid a new hole in my brain and skin graft on the right-hand side. Trouble is the skin was taken from my left thigh which is now sore, so how do I lie with my head on the left and my leg on the right? While we’re working on this, what about the PICC line which is also now on my over-popular left side?

I so want to sleep but my body has been snatched from me and is being so messed about. It needs my psyche to keep an eye on it all day and night. I cuddle myself metaphorically and soak in the many messages of support and love and sympathy. I’m blown away by the empathy and skills of the nurses and assistants and I want to marry them all and keep them with me always.

I’m here because of what’s happened to me as a result of being on this crazily exciting, cutting edge, herpes simplex vaccine trial.

In October, Dr. Chiocca (neuro-surgeon par excellence) drilled a hole in through my skull to deliver the vaccine – which he invented.

A few weeks later I found my body starting to fail. Walking became awkward. Lights felt too intense. Dr. Reardon (neuro-oncologist par excellence) told me he was worried I was doing way too much. My first two MRIs after the herpes intake showed a confused cloud – impossible to identify whether this was a big new tumor or a big immune response provoked by the presence of the herpes vaccine.

Whatever the cause, my entire right arm decided to gradually stop working. Walking became harder, my eyes hurt. I had a shot of a drug called Avastin that restored me to working order… it was like magic and I was incredibly relieved. But this wondrous rescue drug simultaneously contributed to the thin, over-radiated skin on my scalp falling apart and becoming infected. One morning I woke up to red all over my pillow. I jumped on Amtrack to Boston and straight onto the operating table.

I ended up having two operations in one week. First, to remove a golf ball-size area of infected skull. Second, to stretch the skin of my head across to cover the hole left behind and then graft some skin from my thigh to make up the difference. In a few months, I may have a fancy 3D plastic plug implanted to fill the hole. In the meantime, I have an army of wondrous nurses and doctors teaching me how to inject all sorts into my (yup, left-sided) arm three times a day, how to wrap a bandage around my poor head, and how to apply what looks like plastic wrap on the beef carpaccio which is my right thigh.

A few days later and here I now am in a hipster hotel in Boston, with visiting nurses and a puppy in the foyer. My dear friend Wesley liberated Ed and, together with my daughter Emma, took over my care while I was in bed 80. She scoured Boston for affordable hotels and here I am The Verb, writing to you.

Sleep is still a little elusive, but my anxiety is lessening with every successful self-administered injection. My darling daughter Emma jumped on the train and talked me through how to handle all my injections with a calm assurance, able to memorize the manifold directions from the nurses so I could feel good about being able to look after myself.

The over-riding tantalizing, positive news is that Dr Chiocca said that when he was inside my brain he could see some herpes present. So it’s still there, it hasn’t been washed down some drainpipe in my head, or run away. I chose to take this as meaning that this trial really could work for me. I’ve been beaten up but there’s a battle going on inside and our side is on it. I’m on the up.

I’m booked to see Dr. Agarwal, the plastic surgeon, tomorrow. If all goes to plan, he will give me the OK to go home. Another dear friend, Jill, will escort me back to New York, my own bed, my family, and Jazzy.

A couple of nights ago Ed and I watched Nick Broomfield’s documentary, Marianne & Leonard: Words of Love It was a delicious illustration of an era of complicated love, full of the ironies and contradictions that flowered with flower power. Their relationship spanned decades, from intense together-all-the-time passion to separation and distance. When Leanord heard she was about to die, he wrote to her the most beautiful letter, signing off: “And you know that I’ve always loved you for your beauty and your wisdom, but I don’t need to say anything more about that because you know all about that. But now, I just want to wish you a very good journey. Goodbye old friend. Endless love, see you down the road.”

He died three months after she. It was as if their lives had come full circle, reconnecting with the glue of love. They were in step with each other at the beginning and end.

As the documentary came to a close an overriding sense of not being in step with death filled me. I’m very much alive. Because my body can cope with onslaughts. Because Ed and I went all out to find the best treatments for me. Because the minute things go wrong I call for help and my family, my friends, my GBM community of fellow actors, and these docs and nurses jump on it.

Unlike Marianne & Leonard, my circle is in no way complete.  I am still the majority shareholder in what happens next in my life. And I chose to keep pushing the line of progress upwards, despite bumps and setbacks. Dr. Chiocca saw herpes in there. I have a chance.

There’s so much to do, so much to share, so much progress to make and to enjoy.

I chose to stay strong.

X

It was too easy

It was too easy.

My perfect candidature for the polio trial was tested by the people who make the drug. They felt the tumor was too small to meet the trial criteria. This, despite some of the best scientists in the world talking perfect this, perfect that. Repeatedly. They sounded just as frustrated as I was.

I scuttled home to wait for the tumor to grow some. Talk about counter-intuitive.

A couple of weeks later we head back to Boston for an MRI that finds that, sure enough, the pie has risen, so to speak.

But there’s a new spanner in the works. The slot that I was to fill for the polio infusion has been given to another GBM patient while I’ve been baking. And the next slot in Boston is weeks away, which may mean my tumor grows dangerously large.

Ed and I are alarmed, bemused, confused, as it appears is the doctor. I don’t know who’s squirming in their seat the most.

We are presented with other options, one of which we are ruled out of because the criteria exclude people who’ve been on the checkpoint inhibitor nivolumab. Well, I and nivo were best buds for two years, so that’s no good. The other is another virus trial, this time using an adapted version of the herpes simplex virus. It’s in phase 1, meaning the drug is still being tested for safety, but the early signs are positive.

We are advised the best thing to do is to talk to the surgeon, Dr. Chiocca. Only he’s not available today.

Back on Amtrak to New York, a journey that’s becoming rapidly over-familiar to me. I’m fed up. I was all hyped up about participating in the polio trial, being at the cutting edge, the potential for a long term solution.

I try to be cross with the doctors, smelling a snafu in their trial planning.

But I can’t.

I’m not cross. I’m worried. While we’ve been letting this new TEF grow, I haven’t pursued anything else. No radiation, no sending tumor tissue to Germany to create bespoke vaccines. No other chemo or treatments. What I have done is lose precious time. Every day of inaction is a day free for TEF to grow. And a TEF emerging after months of invisibility tends to be even more aggressive than in its initial iteration. Every moment matters.

I’m advised to wait for an appointment with Dr. Chiocca and then go meet him in person. Just as I’m looking at the train schedule, my phone rings. “I thought it would be helpful if I rang you rather than you having to come all the way up to Boston so quickly again,” says Dr Chiocca. I’m warming to him already. Every return trip to Boston with an overnight stay (why do their appointments always seem to start at 7 am?) represents another lost weekend away in some lovely upstate Airbnb. I know this seems more than a little trivial, but the assumption we can drop everything (most notably Emma and Jazzy, in that order please) to head up there for a conversation is starting to gnaw at me a little.

The phone call worked fine. Dr Chiocca ran me through my options which of course didn’t really exist. If I felt really strongly about going on the polio trial, they could try to find another trial site, or perhaps talk to the person who’d taken the slot originally marked for me.

I balked at this. It sounded far too Hobsons’s or Sophie’s Choice for me. I asked him what he would do if he was me. His voice lifted, his speech quickened, and I could sense an aura of excitement: “I think you should join the herpes trial! Yes it’s newer than polio, very early signs are good, and I invented it and I’d be operating on you and I think this could be great!”I asked if I’d be getting the highest dose of the drug, which Fabio had been insistent on. Check. I made sure there really was a place for me this time. Check. I checked if there were any other checks that had to be checked. And then I said YES.

Three days later, another schlep through the horrors of Penn Station to Amtrak and to Boston. I went solo for the pre-op. Yet more blood taken from my junkie-looking veins. Ed had booked me into a hotel right by the hospital which felt like a lesser version than the hospital, where at least you could get a cappuccino. I had to move the next day, which happened to be Ed’s birthday. He’d sneakily raided our small piggy bank and I found myself gliding into a much smarter, more comfortable hotel. The kind where you know they’ve just followed the latest CB2 catalogue, and they haven’t been too mean on the TV channels.

I got a call from a conference organizer, arranging the first-ever Glioblastoma Drug and Development Conference. They’d called me up to ask what I thought of their program and speakers. I said I thought it looked great, but that the lack of any patients speaking was a missed opportunity. Making life better for the patient is both the driving force behind most doctors and drug companies and if it isn’t it should be. Good point, they said. Could I suggest anyone? You bet, I answered.

Ed arrived the night before the procedure to a pile of presents I’d lugged up with me, including a small cake which we chomped down well before the ‘nil by mouth’ deadline.

I couldn’t keep a thought in my head. I glugged down some anti-anxiety meds and hit the sack. What’s the point of worrying? Think of Heir Island. Rig the luggar in your sleep. Go on. Start from the house. Pile the kit into the wheelbarrow. Get the mast and the sails – remember which ones! Mobilize the kids. Note the energizing blue sky and puffy clouds and reassuring westerly breeze. Head down to the beach. Remember how we had to manoeuvre the logs so we could roll the boat into the sea…. Now roll off to sleep.

The next morning, I felt quite the celebrity in the ward waiting for the procedure. Countless people in blue (or was it green?) came by and poked me. One particularly nice woman, with an infectious smile, showed us how they planned to deliver the virus into my brain. She pulled out a small “tower” – her word – and explained how this would be fitted onto my head very precisely to direct the catheter directly down into my brain and into the tumor, using a special MRI machine. It was a wonderful combination of Heath Robinson and Minority Report.

I started to feel excited. I had nothing to lose from doing this. There was a chance I might have a lot to gain. I checked my emails. There was a new one from the conference organizers. They’d added my pic onto the agenda, on the same page as that of Dr Chiocca. I smiled. I showed it him. “That’s a first,” he said. I gave the phone to Ed. All was good.

It’s a week later, and I’m happily full of some version of the herpes simplex virus. After the procedure, I was hit with a tidal wave of nausea and a splitting headache for a very nasty 36-48 hours. Now all is fine, but I’m left feeling seemingly endlessly tired.

Luckily, I discovered the New York Times’ Modern Love column has been transposed into an Amazon Prime series. Watch it – it’s soppy but great.

Luckily, Emma, Tess and Felix are either extremely good at acting or perfect people who are able to get on with their lives – for Emma, this means applying to college – while their mother appears to be trapped in a never-ending Amtrak ride.

Luckily, Ed liked his presents and seems alarmingly able to supplement them with gifts to and from himself. Clever guy.

Luckily, Jazzy still loves me best despite my frequent absences.

And luckiest of all am I. This virus gives me a shot at longevity. A real shot. When you sing the choir director will talk to you about breathing in your chest, or your belly, and the way this causes your voice to differ. I’m quite a smiley person. But now I feel I have a smile in my belly and in my heart as well as on my face. Because I have been given a real shot.

Thank you xxx

Update

Thank you thank you for all the much valued messages of support for my imminent polio treatment.

This is now delayed, probably by a couple of weeks or so.

The people who make the vaccine feel my tumor spot is just shy of being the perfect size for the polio virus injection. So we’re in a waiting pattern.

Watch this space!

The Perfect Candidate

“The timing is perfect for this and you are the perfect candidate,”

Back in the day when I was at school, I don’t remember learning a particular format for writing an essay, other than ‘introduce what you want to say, then say it, then conclude with what you’ve said’ sort of thing.

Maybe the times have changed, or maybe American education is more different than we thought, but the way our children have to write feels more formulaic than what we were used to.

Or maybe I just didn’t pay attention. I don’t know how to explain the last few weeks to you. I do know I need to.

Of late, every day I have an urge to write. A need to record what is happening to me. I’m seeking a modicum of sense and order in the chaos of a most ordinary life of a most ordinary person that has spun so out of control that I feel I’m constantly on edge, trying to prevent a tailspin.

Since the flickering in my right eye at Heathrow on August 11 I’ve had surgery to remove the recurrent cancer, have consulted widely with patients and various doctors, and have looked at many options for how best to stay alive, weighing risks and benefits in an impossibly uninformed way.

The surgery went well. The cancer had returned around the edge of the cavity left by the original tumor. Apparently this is usually the case with recurrence. The MRIs showed a spot slightly further away, and too embedded in a sensitive area for the knife. We left the house at 4am, MRI at 5, then surgery a few hours later. I was left to recuperate in the ICU. I felt fine.

So fine that I was moved to the regular ward in the middle of the night, to make way for someone in a worse state. A few hours later I went for a walk – aided by a lovely nurse – showed I could go up and down stairs, and another MRI, and was then waved goodbye.

From home to brain surgery and back home again within 36 hours.

They kept telling me how healthy I am. My body can bounce back from brain surgery with no problem. Agh, if only I didn’t have this TEF….

And no-one knows why.

We go to see Fabio to discuss next steps. It’s a skinny staircase. He runs through various clinical trial options, none of which sound very promising. I appreciate his honesty, clarity, empathy, and his endorsement that we seek opinions from others.

I now have a wide circle of GBM friends, many of whom have experienced one or more recurrences. Most are in the US, some in the UK.

Ed starts a google doc of all and everything. We head to Boston to meet with David Reardon, a leading neuro-oncologist who treats some of my friends. Lakshmi Nayak, a neuro-oncologist adviser to OurBrainBank, who Fabio introduced me to, works with him.

Ed and I expect Dr Reardon to confirm that strongest hope for me lies in the analysis of my tumor. The hope is that something inside the recurrence will match with something that treats something else.

That’s not how the meeting goes.

Dr Reardon says he’s looked at my MRIs, and because of the location and size of my tumor – near the surface of the skull and quite small – he thinks I could be a good fit for the polio trial. He goes further: “The timing is perfect for this and you are the perfect candidate.”

WAIT WAIT WAIT!!

The polio trial is infamous in GBM circles, partly because it’s received attention from big media outlets including 60 Minutes, and partly because of the intrigue provoked by harnessing a disease that causes such immense human suffering to, potentially, create happiness. One of my dear friends in the UK, Phil Friend, spent much of his childhood in an iron lung. He went on to become an outstanding leader in disability rights. Then I think of Richard Shepherd, one of the founders of Shephard Robson, the architecture firm where my father spent his career. Dick was a giant, whose enormous shoulders betrayed superhuman muscles to move his huge body and polio-affected legs around on stilts. And then I think of FDR, and the lengths he went to disguise his disability.

All my associations with polio are negative. Now I’m having to do an about-turn and replace this image with one of a potential and literal lifeline.

Around 15 years ago, scientists looking at the potential for viruses to work in GBM, and realised there were some similarities in the way that the polio virus works and GBM.

They adapted the vaccine, and are now using it in a few human beings – including me.

Next week, Dr Ciocca will drill a small hole in my brain. The following day, he will insert a catheter with the adapted polio virus, straight to the small raisin of cancer.

And that’s it.

The hope is that the vaccine will kill that raisin of horror, while simultaneously acting as a big wake up call to my immune system to carpet bomb any remaining cancer cells. General Morris at the ready!

I will be checked ten days later, and regularly after that. It’s not without risk – I’ve lost a bit of peripheral vision on my right side from the most recent surgery and could lose more. Plus the area of the irritating raisin is not a mile away from speech. Now I know I have a tendency to ramble, but I’d quite like to keep that problem.

The benefits, however, are compelling. It could give me a lot of time…we don’t know how much, it’s all too new. And as my tumor is being analyzed, and the mouse with my GBM inside is growing, more options may present themselves.

But there is no time to waste. When GBM recurs it does so even more aggressively than initially. Dr Reardon has emphasized that I have a window to do this now. And it may not last long.

Let’s hear his words again:

“The timing is perfect for this and you are the perfect candidate,”

Better be! Wish me luck and off we go X

ORDER! ORDER!

Message from Jessica

 

For just over three and a half years, or 43 months, or something like 15 MRIs, I’ve woken to a voice not unlike the Speaker of the Commons, John Bercow, saying ‘Order! Order! The Noes Have it!’

 

All those MRIs found No Evidence of Disease. Never has No been such a great sound. And its repetition almost led me to believe there really could be some sense of order in my life, despite the disruption of glioblastoma.

 

But the inexorable order of the disease has caught up with me, as it does with pretty much everyone with GBM.

 

The bugger is back.

 

Last Sunday, August 11, Terminal 3, Heathrow. I’m at the gate, about to board, on my phone and I sense a flicker in the vision of the corner of my right eye. Blink. Still there. I’m tired, I’ve flown from Ireland to London the day before. Today I’ve schlepped from Highbury to Heathrow with Ed and Tess and Emma. Maybe my eye is twitching because I was tired?

But I sort of know that’s not what’s happening.

 

Emma, Tess – get Dad. Don’t ask me why just I need him; my eye is doing something funny.

 

I’ll contact Fabio. I know it’s Sunday but I know he’s there for me and I don’t know what to do. Can’t find a number. I’ll email. Maybe I’m about to have a seizure. What if I board – almost everyone has gone through – and have seizure on the plane? Endanger everyone!

 

Close your eyes. Open and it might have gone away.

 

It hasn’t.

 

Fabio is on the phone within minutes, telling me to increase my anti-seizure pills immediately, wait for a couple of hours, and if the eye calms get the next flight.

 

Less than 24 hours later an MRI confirms the cancer has returned.

 

In a week or so a highly experienced, responsive, and father of similarly aged Arsenal supporting son, will open up my head and get the bugger out. He’s called Guy McKhann and has good books on his office shelf. Ah, the things one notices at times of great intensity (I don’t like the design of the bookshelves though…)

 

If he can get enough of it, the tumor tissue undergo deep analysis so that we can see what it’s made of. Some of the ingredients may match treatments used in other cancers. At the same time, some poor innocent mouse will be injected with my tumor, so we can see how the cells progress and figure out how to make this recurrence the only one. A sort of medical mouse mini-me.

 

Next week I’m hoping to have an immunotherapy infusion ahead of surgery. There’s some anecdotal evidence to suggest this might support the internal army’s efforts to expel the bugger.

 

Then surgery the following week. Probably.

 

It is staggering the incredible speed and quality of endeavor that is going on right now to keep me alive. I am so extraordinarily unlucky to have this thing, and so equally extraordinarily lucky to have some of the best medics in the world busting a gut to get me through this next hurdle.

 

Because that’s all it is. We know GBM recurs. We know it’s best to have surgery if possible. We know that the best team, acting fast and smart, with my ability to keep my psyche in gear, fueled by you…. and love for this intoxicating ether we call life… will get me through.

 

You can try, TEF, but you’re not getting me. I’m too smart. I’ve vacuumed so much learning about this shitty thing that I am not surprised, and therefore I’m steady at the helm. I love myself too much. I didn’t ignore the flickering. I didn’t hesitate to bother my neuro-oncologist on a Sunday afternoon. I didn’t crawl into a ball and brawl. I sucked in the life force of my family, my children who I feel so connected to, feeling the strength from Ed with every touch, and looked into the mirror.

 

This time it’s different. The mirror asked me, when I was first told I had GBM, if I was up to the task ahead. That it was really down to me.

 

This time it’s you and me. What I’ve found over the three and a half years since I’ve known there’s an evil stranger inside me is that We are going to get through this together. If you were me now, I’d look you in the eye, unable not to provide some physical comfort, and be with you. Knowing you’re not alone means knowing you are truly alive.

 

I’m going to take it easy, rest up and get ready for the carving, and then I’m going to write my book and make OurBrainBank work for my comrades who are batting that curved ball 24/7, and I’m going to do this knowing that the kernel of me is a good thing that isn’t done yet.

 

XXX

Just landed

It’s the first day of a new year and I’m on it. I’m sitting in 39G in a Norwegian airbus, sandwiched between a sleeping husband and a waitress who’s going to ask her boss if she can take a week out every two months to see her boyfriend. She keeps hinting she might quit if he says no. She was chattering away to her man and I could tell she was waiting for him to encourage her to leave. But he didn’t, and now she’s playing bejeweled on her iPhone too quickly, trying to work out what she should do. She has the whole year ahead, and doesn’t know where to start.

But I do. I’m nearly three years into my new life, and I’m more focused, more confident, more alive, than I’ve ever been. Years ago I watched a documentary about posh and bex. David had just failed to bend it like Beckham (check what sin he committed that took England out of the World Cup) and was subject to the full wrath of fickle English fans. The camera followed them into a lux car where posh reminded him: ‘whatever hits you makes you stronger’.

Ah the snobbery of the English. I found myself parroting this line, aping her Essex accent, dismissing it as the sort of cliche we (us truly posher brits) see as simplistic in the extreme.

And yet. And yet I find myself full of energy for whatever lies ahead. I’ve made it this far, and I really wasn’t sure if I would. Posh was right.

I’ve come through a year that saw us bury first my maverick, enticing, deliciously difficult 96 year old mother in law, swiftly followed by the distressing demise and death of my exceptional father.

I’m flying over the Atlantic for the fifth time  since this time last year. Each time I’ve watched people I love fall apart. I participated in beautiful, moving ceremonies that sought to express in some small way the contribution of both on earth. I find myself attacked by tears at unintended moments, grief hitting me with no warning. I’m comforted by the logic that points out their longevity. But it doesn’t distract from the loss.

My father was a great communicator. He often spoke in succinct, memorable phrases. When I was a young child, grappling with the growing realization that death comes to us all, he would reassure me by saying that he wasn’t afraid of death. I can hear his voice telling me this. I can see his face when he was saying it – his expression serious but gentle. His eyes unafraid to meet mine. A special expression for his child. It worked.

Last March I stopped all medical treatments for my brain cancer, on the advice of my neuro-oncologist. I’d blasted my body with two years of chemotherapy, immunotherapy, electrotherapy, together with a rich list of supplements, special nutrition, and intermittent fasting.

My MRIs showed ‘no evidence of disease progression’.

I came out of Dr Iwamoto’s office confused. Emotionally, I couldn’t equate being happy with stopping medical treatments. I had spent over two years staring down death, using every weapon I could command. Yet I was being advised to lay down my arms, even if the enemy could resurface at any time. 

I could understand the reasoning. Two years of chemotherapy is more than a year in addition to the standard of care for glioblastoma. The immunotherapy I was on is unproven as a mono therapy for my disease, but the hope is that it will leave an indelible impression on my immune system – creating a memory – meaning if it is to have an impact, it would have done so already. As for the electrotherapy… the immunotherapy caused an allergic reaction in my scalp to the gel on the arrays used to stick the Optune arrays on my head. But I was reassured that I had already worn it for longer than the nine months evidenced by research.

I’ve never taken medicine unless absolutely needed, and my MRIs have – to date – been good. But stopping treatments made me feel as if I was being forced to be a passive patient, waiting for a recurrence. Glioblastoma returns because it doesn’t grow as a clearly defined, solid tumor. Rather it spreads tentacles undetectable to the finest MRI and strongest radiation. The blood brain barrier, critical to keeping healthy brains healthy, becomes a foe for those of us with brain cancer, because it inhibits treatments getting through.

What was I to do? It was beyond me, psychologically. My weeble personality was struggling to bounce back up. I tried sticking to my regime of the ketogenic diet and intermittent fasting. I tried enjoying wonderful family holidays. I tried channeling my energies into OurBrainBank. I tried seeking a part time role in the workplace. Nothing worked sufficiently strongly. I went back to see my psychiatrist. We discussed my symptoms and came up with a recipe that combined medication to lift my mood, plus a psychologist to help me work through some of my deep rooted behaviors that weren’t helping, particularly eating too much. I have used food as a way to cope with anything that seeks to swat the weeble in me, my whole life.

Just as these new crutches came to my aid, the deaths of Pam and my father hit. 

And just as I sought to manage my grief, my son Felix broke his leg – while motorcycling in Vietnam.

Back to the here and now and the Norwegian airbus. I had five emergency weather alerts for New York when I woke up this morning in Essex. The flight is smooth. The waitress has played bejeweled for the entire flight. I’m clear headed. I’m looking back at a year that saw me gripped in a washing machine that just kept on and on, making me wetter and wetter, then squeezing all the strength out of me, taking away my ability for me to control things. But for now it’s stopped. 

I spent new year’s eve watching a rubbish old movie, eating a very English game feast, and sensing the warmth that being with my mother provides.

I have much greater clarity on what I should do in the year ahead. And, in brief, it’s about exercising the core of why I’m where I’m at: the power I have as a patient  living with one of the worst cancers that exists. 

What I’ve learnt last year is that I’m not as in control of my emotions as I had thought. When I’m able to rest my psyche, my mind can heal and reset and set me once more on the path of determination.

I’m not afraid of death. I had become afraid of life. Now I realize that the language of terminal illness is a barrier. Everyone dies, so life is, by definition, terminal. When I was told I had a terminal disease, what I heard was that my life could end any minute. When I was told medics were working hard on finding a cure, I heard that there was an aspiration that at some time in the future, we may find a way to stop this disease causing death.

What I now know is that, because I feel good today, because I have no evidence of disease today, because I’m happy and loved and loving others today, then today I am cured. Today I am alive, well, and embracing whatever hits me in this new year. I can enter 2019 fired with the knowledge that the skill set I have has served me well so far, and that I want and can and will make better use of who I am to help rid the world of glioblastoma. Because the most powerful people in this story are people like me. Impatient Patients.

The weeble is standing up straight. Here we go.

Xxx

See-sawing up and down

Our house has a cellar. In the cellar is a black metal box. Inside the black metal box are my old diaries.

Inside my old diaries are really boring accounts of what I did on such and such a day, some random year past.

The first paragraph invariably started along the lines ‘I’ve got so far behind… I have to catch up… I got the bus to blah blah and changed to another bus to blah blah’. YAWN.

So here I am, catching up with you, dear reader. The last time I wrote was almost 13 weeks ago…

AGH

Does this signify some terrible bad luck? Have I betrayed you by not keeping you abreast of my life? Oh, the arrogance and the assumption of interest. Sorry. But I want to relay where I’m at, and where I’ve been. And during this overdue therapy session, aka writing a blog post, perhaps I’ll get some personal enlightenment as to why it’s taken me so long.

The new norm of ordinary, which I wrote about last time, seems to be taking root inside my psyche. I had a long conversation yesterday with a woman whose husband has glioblastoma. She’s terribly upset that he has this horrible disease, and frets that he doesn’t seem to be actively pursuing all the treatments out there.

As we were talking, I felt the same sensation as when I go online and delve into the GBM community.

I feel ordinary. Really, boringly, ordinary. My anxiety about where the disease will take me has flipped to anxiety about how far I can take it. How can we engage more people to use the OurBrainBank App? How can we secure more funding? How can I get person W, Y, or Z to reply to my emails??

Ooooooh but it feels good.

I’ve stopped taking chemotherapy. Two years of seriously heavy toxicity drugs, blasting my system every month for five intense days. Over.

I’m tapering off the immunotherapy – subject to the next MRI or two.

I’ve stopped waking up in the middle of the night and staring at the window blinds in terror.

If that’s a list of things that are ending, it’s more than counterbalanced by a list of things I’m making happen.

OurBrainBank is up and running. Hang on, I was only diagnosed a couple of years ago with deadly brain cancer. You’re telling me that you’ve got a cooool nonprofit up and going, with an amazing board, hardly any funding, but with charitable – 501c3 – status, Institutional Research Board (IRB) approval, and more than 200 people with glioblastoma and carers using the OurBrainBank App already?

YEAH!

This time last year I was scared to book the summer holiday. I worried I might have a recurrence, and our flights might be nonrefundable, and what would that do to the tiny pot of $ I will leave them?

This morning, Ed and I talked about maybe hopping down to Costa Rica with the kids for a couple of weeks. I didn’t even blink.

It’s not that I’m in denial. It’s that I’ve figured out how to really, really live day by day. How to get joy and energy out of progress. How to respect the learning – intellectual, psychological, emotional – that I’ve absorbed since this extraordinary chapter of my life started.

When I go into the MRI tunnel, I sometimes drift off to Greenwich Park. There’s a playground there. It’s the see-saws I remember most vividly. They were really long, so you could go quite high and feel like you were dangling in space, or crash right down to the bottom, invariably screeching and laughing in equal measure.

It’s an apt metaphor for what I’m going through.

Year one was bottom of the see-saw; year two wobbling a bit, in every way feeling up and down, often simultaneously.

Now, as I enter year three (oh, the utter joy in typing that number) I feel the see-saw lifting me up. There’s a sense of light-headedness as I feel more able to accept how well I’m doing with this bugger of a disease. And more proud, strong, delighted… at the extraordinary feat we’ve pulled off, of creating OurBrainBank.

If GBM is about death, destruction, negativity, pain and utter hopelessness, then OurBrainBank is the opposite.

I don’t know what lies ahead, but whereas I equated that with fear of hearing that the cancer’s come back, I now increasingly see it as revealing the mystery of how we can beat the bugger.

This is no ordinary initiative.

This is about switching out those on the bottom of the see-saw – the patients, stuck with their uncontrollable bodies riddled with diseases they don’t know how to treat – while medical deities with acronyms after names, white coats, extraordinary language where words only come with a minimum of three syllables, pronounce on treatments and prognoses.

Flip it. I’m at the top. I’m telling you that the OurBrainBank App is there to serve me, recording how I feel I’m doing, every single day. And what I see from up here is that the digital revolution, the growing awareness that patients can play an active role that helps not just them but science…. Is inexorably making progress.

My MRI shows ‘no evidence of disease’. But we know that MRIs are indicative, not definitive. So, TEF (The Evil Fucker, aka my brain tumor), I’ve decided that if you’re invisible to the MRI, then you’re invisible to me. You’ll stay right down there at the bottom of the see-saw because I’m quite happy at the top.

You will try. But I’m so much better than you. I can create, you can only destroy. I can bathe in the intoxication of succeeding in developing something that can, is, will…. Help me and oh so many others. You have nothing to live for. You don’t even want life. How sad is that. How bad are you.

Stay that way.

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Eloquently ordinary

I was listening to a radio show featuring a veteran of the Iraq war describing how his decision to step out of the Humvee that his best friend was traveling in led to his survival and his friend’s death. He didn’t know why he’d decided to get out. They were in a calm area. The Humvee wasn’t attacked. He chose – for no clear reason – to step out and walk. His friend stayed inside the vehicle. The Humvee drove off. The driver lost control, no-one knows why, and everyone inside died. The inexplicable nature of that moment tortured the vet. That split second decision, made without conscious thought, yet with such massive consequences. One lives, one dies.

Two years ago I decided to do everything possible, and everything impossible, to live.

The veteran who lived couldn’t cope with the hand he’d been dealt. He relived the moment from when he and his friend changed from being as one to being at the literal opposite ends of life’s spectrum. He found himself caught in a seemingly forever freeze-framed state of PTSD, unable to ‘move forward’ as we might say. Eventually he sought solace in communicating with others. He joined an initiative which brings together vets with country music artists, allowing them to express their emotions. But it was in his meetings with his psychiatrist that he found the insight that got him through. He realized he had a choice. To stick with ‘what if?’ or to move to ‘what now?’.

Blindsided by my diagnosis of glioblastoma (GBM), I grabbed every treatment I could get. I switched doctor so I could have more than the Standard of Care, even if unproven. I embraced complementary therapies, adopted the ketogenic diet, fasted twice a week, walked every inch of the park. I couldn’t help but think about GBM all the time. I saw a psychiatrist.

I’ve been reading a fascinating autobiography by Kate Bowler, assistant professor at Duke Divinity School. Kate is an expert in the ‘prosperity gospel’, a branch of Christianity that promises a cure for tragedy. Its bold central claim is that God will give you your heart’s desires, whether that’s a buoyant bank account, or wonderful career. Or healthy life. Kate’s faith has been massively stress-tested since she received a diagnosis of stage 4 cancer. She has just published ‘Everything happens for a reason’. She writes about the contrast in how she viewed her life pre-diagnosis and post: “If I were to invent a sin to describe… how I loved – I would not say it was simply that I didn’t stop to smell the roses… I failed to love what was present and decided to love what was possible instead.

“I must learn to live in ordinary time, but I don’t know how.”

It’s taken me two years to live in ordinary time. It feels good.

Over the next few weeks I will complete two years of chemotherapy, two years of immunotherapy, and nearly two years of wearing the Optune device. I am extraordinarily lucky to have the body of a workhorse, able to withstand all these drugs and more. At the same time, I’ve fed my psyche by focusing on what I can do, rather than what I can’t. I can learn about the disease. I can stare down the dire survival statistics. I can face the challenge that no real progress in treatments has been made since 2005. I can turn these realities into challenges that we will and can overcome. So when I look at the scan of my MRI from last week and I see beautiful strange entrancing squiggles, but no bright alarm cancer lights, I feel the vibrancy of life in the here and now. And when I get up in the morning and think about my day, I find GBM doesn’t pop up as the irritating alarm in the way it did a year ago. GBM will never let me be considered ordinary, but I’m starting to live in ordinary time.

I continue to benefit from constant, real-time infusions of interaction treatment from friends, family, colleagues, others with GBM. I wonder how anyone can ever survive solitary confinement. Because each interaction feeds what is left of my brain with new thoughts, new springboards that help refresh me, keep my internal dialogue alive, and help me find the right path for me today.

In just over two weeks (what is it with the number 2??) the OurBrainBank app goes live. Yes! Can you believe it – it’s really happening and it’s really bloody brilliant! We’ve built a board of outstanding human beings, spanning medical and tech experts to lawyers, marketeers, and people with glioblastoma. Check out my fellow GBM traveler, Adam Hayden, who joined us most recently and who writes like a dream https://wordpress.com/read/blogs/118032889/posts/3592

OurBrainBank is founded on the belief that if you design a treatment for a disease around the person experiencing it, you will have a better chance of meeting need. Our initial tool makes this happen by using uMotif’s brilliant app. I’ll blog as soon as we’re good to go. But the point is that we are hoping – determinedly so – to bring together people like me and Adam who are living with GBM, with people like you, who are anxious about people like us. We want to use our collective power to make it possible for everyone with GBM to live way beyond two years post diagnosis. And to live in ordinary time.

But these are extraordinary times. Technology allows us to connect, collaborate and, we believe, conquer. Charles Darwin was right on the money when he wrote: “It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is most adaptable to change”.

Which leads me to one of my all-time favorite lines from the Bard himself. Coriolanus’ mother says: “Action is eloquence, and the eyes of th’ ignorant more learned than the ears.”

OurBrainBank allows us to monitor and manage the change that GBM provokes in our lives. In so doing, our lives will morph into data, and transform again into medical currency that can fuel research and, ultimately, a cure. That is our long term goal. Capturing our symptoms is gold dust for the learned medics. But Our data is the first step. Unlocking the extraordinary power of patients is the key. People like me and Adam have learnt more about life and death in the last two years than most people will ever get a chance to. We are students of the University of Creativity in the face of Adversity. Our first step is to engage many more people living with GBM and their caregivers. From Day One, I reckon the OurBrainBank app is going to help people like me adapt, to move from supposed ordinary lives to extraordinary, and back to ordinary. To do so smoothly, effectively… and eloquently.

And perhaps to a New Ordinary.

X

 

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Message from Jessica: Mr Frankl comes to the rescue

10/22/2017 at 1:06pm

I stole my mother’s Deux Chevaux when I was 17, the day I passed my driving test. Not literally, but effectively. I took to driving as I did to smoking: like a duck to water, so to speak. So strong was my love of driving I even forfeited lagers at the Rose & Crown, the hangout pub (‘Rose & Pose we called it) aka home for me during my teenage years.

My pleasure at being behind the wheel, coupled with decades of driving at English speeds, meant it was just a matter of time I’d get in trouble driving over here.

Ed and I were heading upstate, me at the wheel, gliding along. Him telling me to slow down as per usual – yada-yada-yada – and me ignoring him, also as per usual.

Just as in the movies, the police car lights up, blasts out, and I pull over. An extremely tall man with a fancy hat and sunglasses strolls over. He asks for my ID. The problem was that not only did I have no ID, I had no US driving license, no UK one. Nothing.

Uh oh.

My strategy was to up the English accent, and take a long long time pretending to slowly search for fictional/ID, all the way expressing apologies in the way that only English people can.

Eventually he asked me to get back in the car, telling me that he’d let me go, but that I really might want to consider getting some form of ID and a driving license before my next trip.

My ability to act, spin, manipulate, whatever, had got me out of a potentially tricky situation. The art of persuasion is of course at the heart of my profession, PR. At the time of this event I was recruiting, so I did wonder if I could simulate this situation for potential candidates, to test their ability to convince people to do other than they might….

There’s a much more serious point here, relating to living and surviving a Grade 4 cancer diagnosis.

I was reminded of this when I started reading the phenomenal ‘Man’s Search for Meaning’ by Viktor E. Frankl. You’ve probably all read this. If not, I suggest you do. It is the most enlightening prose. Frankl was a psychiatrist who survived Auschwitz. His book offers extraordinary insights into why some people had a life after the camp, while so many perished.

Early on in the book, he talks about how he was able to forge a relationship with his ‘Capo’. These were SS appointed prisoners who headed up labor squads. They kept their privileged positions by terrorizing subordinate prisoners. Frankl was able to get into his Capo’s good books by using his personality – particularly his innate empathy – and psychiatric knowledge to advise the Capo’s struggles with his romantic life.  He adjusted his manner to appeal to his foe’s better instincts. As a result, the Capo kept Frankl close to him, and ensured he had preferential treatment. He valued Frankl’s advice, so it was in his interests he stay alive. This meant Frankl got a myriad of tiny advantages: a morsel more food, a slightly better task – individually not significant but collectively making a huge difference in his chances of survival.

In sharing these two tales, I am in no way attempting to equate them.  I’m also not of the view that surviving a concentration camp or a serious cancer diagnosis is down to personality. What I am observing is how my particular personality can be put to best use in the face of the challenge I face. Whereas I had thought that the weeble was incapable of falling over, and that indeed it was in my control, I have found the last few months the control slipping, and the weeble failing to upright itself as quickly or as easily as in the months following my diagnosis.

I’m glad to report the wobbling weeble has regained its balance and stands straight and still.

Mr Frankl has a lot to do with that. As does the psychiatrist I’ve started to see – Dr Marina Benaur – who brought the book to my attention.

I was becoming increasingly anxious. Nighttime trips to the bathroom stretched as I found it hard to get back to sleep, the GBM horror preventing me relaxing. Face book GBM groups enticed me in, only for me to come away often feeling aghast at the tales of carers who have just lost loved ones, often just weeks or a few months after being diagnosed. And frustration at the complexity of getting OurBrainBank off the ground making me feel out of control.

Maybe it was psychosomatic, or maybe just the cumulative impact of being on chemo and immunotherapy for a year and a half. But I started to itch. And itch. And itch. A corner of one of the arrays I wear on my head would come lose. An itch the equivalent of a squad of mosquitoes would emerge, proving irresistible to my index finger. I’d sneak in a scratch; enjoy a delicious moment of satisfaction, swiftly followed by pain. And then the itch grew to cover my body. I’d have a shower and find myself using the towel so harshly that my skin went red. Small sores grew into open wounds.

I was referred to Dr Lacouture at Memorial Sloane Kettering, a senior dermatologist who’s been seeing a number Optune users with sore scalps. Novocure, the company that makes the device, tried new barrier creams. Despite all these efforts, my skin became increasingly painful. And new treatments or the cumulative impact of 20 months on chemo and immunotherapy caused me to wake up to a body covered in red hives. I found it hard to think about anything other than the itching and the sores and the hives. It got so bad I couldn’t even take the arrays off without moaning.

The upshot is that I’m taking time off the device, using creams and fresh air to heal the wounds. While it feels liberating not to wear the arrays and carry a bunch of wires and a bag round with me, it also worries me. Optune is the only treatment other than the chemotherapy I take, that’s proven to extend life. So I want it back on as soon as my head is healed.

Nevertheless, I feel good.  The best medicine of all is a good MRI. Just short of a week ago I ventured into the bowels of Columbia yet again. I emerged triumphant just a few hours later. “No evidence of disease progression” and that fabulously reassuring, trusted smile from Dr Iwamoto.

But I’m still confused.

I seem to be surrounded by spectrums and contrasts, my mind and mood ricocheting from the substantive to the superficial. Did I really seek to relate my ability to avoid a speeding fine with Mr Frankl’s successful dodge from the gas chamber?

I must be mad. No need to respond to that statement.

Here’s another spectrum. I began the summer by penning an OpEd for the NYT, and ended it by appearing on the Dr Oz show. For my British friends, Dr Oz used to appear on Oprah Winfrey’s show, pitched as a medical expert who could connect with the masses, and one who was open to alternative treatments, as well as traditional Western medicine. Many are skeptical of him, just as many support him.

Dr Oz planned a feature about GBM, centered on an interview with Maria Menounos, who has been quite public about her recent surgery to remove a benign brain tumor. Maria’s mother has GBM, so Maria asked the producers to invite people with GBM to the taping of the show.  The producers wanted to convey a message of hope, and hence I was invited to be in the audience and say something hopeful. This I duly did: Dr Oz .

People with GBM and their carers are very active online. Their reactions were at different ends of a GBM spectrum. Patients cheered me on for the message of hope. Carers were polite yet clearly critical that the picture of GBM that emerged was overly positive. Many have lost loved ones just a few months after being diagnosed.

I realized that I had been insensitive to their feelings.

The core of OurBrainBank is really about shifting the axis of cancer treatment from the lab to the patient. So my mind is concentrated on what patients think, feel, express, want. In my desire to be upbeat, I risked conveying a lack of sensitivity, both for people living with GBM and having a much harder time of it than I, as well as those close to them.

I do believe that one’s attitude to disease is important, even if it simply helps one stay sane(ish) in the face of a horrible disease.

Maria Menounos quotes Rocky Balboa, perfectly articulated by Sylvester Stallone: “Life’s not about how hard of a hit you can give… it’s about how many you can take, and still keep moving forward.”

I think the words of Mr Frankl go just a little further and deeper: “It did not really matter what we expected from life, but rather what life expected from us. We needed to stop asking about the meaning of life, and instead to think of ourselves as those who were being questioned by life—daily and hourly. Our answer must consist, not in talk and meditation, but in right action and in right conduct. Life ultimately means taking the responsibility to find the right answer to its problems and to fulfill the tasks which it constantly sets for each individual.”

If GBM is my life challenge, then OurBrainBank is a determined effort to turn challenge into opportunity. From negative to positive. From death to life. To persuade all of you, and all of me, that we can turn this monster disease around and, in so doing, make major impacts on all cancers. I’m going to end here now because otherwise I’ll start ranting on and on about how fabulous OurBrainBank is, and risk alienating y’all.

Maybe next time. Because by the next time I post we will most likely be up and running. Oh yeah…. It’s happening! We have a website, we have some initial funding, and we have a passionate group of brilliant minds.

http://www.ourbrainbank.com

This is going to fly. And I’m going to stay strong.

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Not a nice girl

So Taylor Swift is not a nice girl anymore. She’s all snake-like and evil-eyed and jealous and untrustworthy and has a horrible reputation. She’s trashing all her boyfs and all her BFFs and herself.

I’m no Taylor Swift, but I do feel I’m moving from being nice and compliant to nasty and angry.

We have a slide in the OurBrainBank presentation. It has three statistics on it. Eighteen thousand people are diagnosed with glioblastoma (GBM) in the US each year. That means it’s rare. Five percent are alive after five years. That means it’s deadly. Only 5% of applications for research funding into GBM are successful. That means we’re failing.

Not just failing people like me.

But people like you.

Because everyone is affected by cancer.  One in two of us will experience some form of the disease in our lifetime.

Not only is 5% unacceptable, it’s stupid. If we crack the hardest cancers, then the others are a breeze. Yet the converse is what we currently do.

GRRRRRRR

Here’s what I’m cross about. I have a great idea – OurBrainBank – and it’s taking too long to get off the ground. I’m not clever enough to move it fast enough. I’m not on it enough to get the money we need to employ the fabulous person out there to drive it. I don’t want to think about GBM 24/7. And yet I can’t not.

I’m frustrated because my normal default setting of being a passionate persuader hasn’t kicked in as expected. Maybe it’s because the personal stakes are too high. Maybe it’s because some hidden depth of my psyche acts as a health warning, keeping me from obsessing about it all day long.

One thing I’m not is Taylor Swift. She’s out there with a video blaming everyone and everything. I’m at home scratching my itchy head, driven mad by frustration and all my manifold deficits.

Oh for clarity!

My lens was clear and focused just over a month ago. I was celebrating Alicia’s birthday with a group of friends, sipping cold drinks outside as the sun went down over the Hudson. My phone buzzed with a news alert. Senator McCain diagnosed with brain cancer.

I knew it was GBM. As we uber’d it home I emailed my mate Matt on the NYT OpEd team. How about the patient perspective on this? Yes please he said the next morning. And the morning after that it appeared.

https://www.nytimes.com/2017/07/20/opinion/john-mccain-brain-cancer-glioblastoma.html

Ed has always said that writing is much easier when you know what you want to say. In this case, I did, and it all happened deliciously quickly and successfully.

But being clear about getting OurBrainBank off the ground? I had the idea over a year ago, and we still haven’t been registered as a 501c3. Why is it taking me so long? And why has this blog taken me so long, when the process has been so helpful to me every single time I’ve written previously. I mean, you are my virtual therapy team!

Why haven’t I written since my MRI last week? Because it confused me, I guess, in a way that good news shouldn’t. I’m doing well. Yet again the cavity left from the surgery has shrunk a little. The images only do so much for me. Dr Iwamoto’s smile is all I need to see. Esther, the world’s best Nurse Practitioner, sends me the report from the radiologist. Lots of gobbledygook ending in the last line which I’ve read and reread and reread: ‘No evidence of tumor progression’.

And yet I’m unsettled.

Maybe it’s because I’ve been away for a whole month. I pleaded with Dr Iwamoto to liberate me from the twice-weekly infusions at Columbia (over an hour away door to door). He and Esther moved mountains to work out a treatment schedule that would allow me to indulge in time with the familiar – Heir Island, my geographical soul mate, and the new (to me, duh!) Greece, from the Acropolis to the island of Kea, with dollops of London in between.

I slept, sunbathed, walked, sailed, swam, read, and spent hours with my family and very close friends.

Still unsettled.

If I’m not the passionate persuader of old at the moment, what and who am I? Angry angry angry.

What I want to be is positive and determined and gutsy and smart. Above all, effective.

I worked with Gehl Architects for a while. Jan Gehl was the pioneering architect who articulated so clearly that it’s the space between buildings that are as important to design as the buildings themselves. Jeff Risom, my client, had a great way to describe the firm’s approach. He called them ‘idealistically pragmatic’. I love that. I want to embody it.

Fishburn Hedges, the corporate PR firm I landed in after starting my career in crusading charities like the Refugee Council and Shelter, used a client’s description to brand itself: ‘a strange combination of the sensible and creative’. Yes please!

The day after the launch of the Sheila McKechnie Awards, a scheme set up by the Sheila McKechnie Foundation which I chaired, having worked for this extraordinary and wonderful woman when she was director of Shelter, I received an email from Dame Julia Cleverdon. She congratulated me on getting the Award scheme off the ground, just one year after we set up the Foundation with a zero budget. Julia described the event as the right combination of ambition and FDI. I read and reread and reread that also.

These play out in my poor beleaguered head as I seek a way to articulate how I’m feeling. Why I’m not idealistically pragmatic or sensible and creative or visionary and yet on it. And all I can come up with is unsettled.

And angry.

Enough with the reasonable patient. Enough with complying with crazy diets and exercise and pill popping and and and…

Enough with the being grateful at the fabulous treatment I’m getting.

Enough with the gosh, how well I’m doing and beating the odds.

I WANT TO LIVE A LONG AND HEALTHY LIFE.

I DON’T WANT TO WRITE ABOUT 5%.

Quite soon after I was diagnosed we went to the movies with friends. Jenn and Holly – you’ll remember that truly dire The Witch, which promised much and delivered little? As the film started, Jenn whispered “I’m scared!” to which I replied with a speed that betrayed this was instinctive: “I’m not scared of my brain cancer, so how can you be scared of this movie?”

I meant it.

I’m not scared of TEF. I’m angry at how dare it even think about getting inside my head.

I’M ANGRY.

I’ve got to. Delete. Restart. I’m going to get over this feeling of being unsettled. I’m going to keep the anger and morph it into fuel. And I’m going to up the ante.

Watch out for the launch of OurBrainBank. Join me in spreading the word. Do it for you, for me, for all of us. Because it’s about saving and valuing and extending and preserving and… above all…. Living life.