Ragged Clown

It's just a shadow you're seeing that he's chasing…


Brain surgery — a philosophical dilemma

I was at the Broken Dock on Saturday, sitting at the big, communal table where you have to share with strangers. On my left, there were two dudes about my age and they were arguing about the stuff I like to argue about. On my right, there was a married couple in their 30s trying to ignore the two dudes arguing and enjoy their Saturday afternoon out with no kids. I was trying to read my book but it’s hard to ignore two dudes arguing about stuff that I like to argue about so I tried to pretend not to listen.

The Broken Dock where much philosophy happens (different day though).

I learned later that the two dudes were old friends who see each other once a year to hang out and catch up and argue philosophy. They covered all the good topics. Is patriotism good for society? When does patriotism shade into nationalism? Is that bad? Should we encourage immigration from other cultures? One was arguing from what I will call the Daily Mail position while the other was more Guardian — though they were both smart dudes and able to address each other’s point of view intelligently and with charity and good nature.

At one point, Mr Daily Mail said something outrageous and I blew my cover by laughing out loud so they invited me to join them. Before long, Married Couple joined in too. It was a fun afternoon. Mr Daily Mail bought us all drinks and we solved many of the philosophical problems that have challenged philosophers down the ages. We were even able to classify all the lines of Alanis Morriset’s song according to whether or not they were actually ironic (Mr Afraid-To-Fly: yes; free ride when you are already there: no; rain on your wedding day: only if you are a meteorologist, don’t you think?). We also declared that the international unit of irony is the KiloSpoon.

All I needed was a knife.

With the irony problem solved, Mr Guardian announced a new topic.

“I’ve got one!” he said. “Imagine that you’ve just been told that you only have a short time left to live. What would you do with your time remaining?”

Life, if well lived, is long enough — Seneca

“Well,” I said.

“I’ve just been diagnosed with a brain tumour. It’s terminal. There is no cure but they can extend my survival time with surgery, chemo and radiation. I don’t know the tumour type yet but median survival ranges from a few months for a glioblastoma to a couple of years for an astrocytoma to about 7 or 8 years for an oligodendroglioma. I’m not dead yet so it’s probably not a glioblastoma. I just had another MRI and I should find out more next week. What should I do with my time remaining?”

I’ve been thinking about this a lot recently. Researching too. Of the dozens of papers that I have read, most say that surgery for a diffuse low-grade glioma (LGG) is controversial. The benefits are questionable, the recovery times are awful and the risks of temporary and permanent brain damage from surgery are considerable. Still, the standard of care for an LGG is to have a craniotomy to remove the tumour and, depending on the molecular profile of the tumour, to follow that with radiation and chemotherapy. However, there are no (zero) studies that compare the outcome for surgery vs no surgery (there are also no studies that compare parachutes to no-parachute because such a study would be unethical).

I found several studies that compare survival times based on extent of resection (EOR). If they get 100% of the tumour, overall survival (OS) is X. If they only get 90%, OS is a bit less (and so on, for 80%, 70% etc). All these numbers vary according to the age of the patient, where the tumour is, how big it is, what the grade is and how long it has been there. LGGs are very rare anyway so the numbers involved in computing these stats are tiny and mine is the rarest tumour of all: there is only one of me.

So there seems to be a strong correlation between EOR and OS. But, hold on! Why would they only remove 90% of the tumour? Is it because that last 10% is in an important bit of brain? The bit that would kill you if they chopped it out? Maybe that apparent correlation is about where the tumour is rather than how much they are able to chop.

While we are talking about brain-chopping, how do they know which bits to chop? There’s a magical fluorescent dye that shows you which bits are tumour and which bits are healthy brain tissue. Unfortunately, it only works on high-grade tumours and we won’t know the grade until after surgery. And you thought brain surgery was easy!

Which bits can you do without?

There is a thing called a ‘needle biopsy’ where you can take a sample of the tumour to analyse its molecular profile without full-on surgery but gliomas tend to be heterogeneous — different bits of the tumour will have different mutations — so a needle biopsy is unreliable.

Most craniotomies are done ‘awake’ these days so the surgeon can talk to you while he chops. This allows him to prod a bit of brain and see what it does.

Hmmm…. This bit makes his right hand twitch. Let’s not chop that bit.”

They also give you little tests like:

“Count to ten for me.”

“One two gargle bloop sslllllpp”

“Ah. That’s the speaking bit. We won’t chop that bit either.”

Duet for brain and guitar

That famous philosopher, Donald Rumsfield, might point out that there are limits to this technique. The surgeon can figure out the known unknowns but how does he know which bit has Dave Gilmour’s guitar solo in ‘Shine on you crazy diamond’? Which bit knows the capital of Iceland or the colour of my true love’s hair? There are no stats about that in the scientific literature.

La fille au cheveux de lin – Claude Botticelli

I’ve yet to meet anyone who has chosen to not have surgery for a glioma. The smarter members of Smart Patients might say that’s because they are all dead (I call them Smart-Ass Patients). My surgeon is definitely pro-surgery (“he would say that, wouldn’t he?”) but I need a little more evidence before I decide whether it is right for me.

Whenever the topic of Steve Jobs comes up on Smart Patients some members get really angry that such a smart man would try to cure his cancer by drinking vegetable smoothies. Do they not wonder whether perhaps Steve Jobs knew exactly what he was doing and he knew that chemotherapy would not have cured his cancer either? And that vegetable smoothies are a lot more delicious than chemotherapy. I know one cancer patient who declined treatment and is now driving around America in a van having the time of his life. He insists that ‘You are not “refusing” you are “choosing.”‘

He will die one day. But so will everyone else.

What it all boils down to is that I am going to have to make a difficult decision with very little data. If surgery is gonna extend my life by 9 years, maybe it’s worth a shot. If it’s gonna extend it by 6 months and I am gonna spend 9 of those months recovering from surgery then, maybe not. And no one’s really got it figured out just yet.

Lilli sent me a poem yesterday. She said it reminded her of me (though Lilli doesn’t know me in real life). I’m honoured by the comparison.

So live your life that the fear of death can never enter your heart.
Trouble no one about their religion; respect others in their view,
and demand that they respect yours.
Love your life, perfect your life, beautify all things in your life.
Seek to make your life long and its purpose in the service of your people.

Prepare a noble death song for the day when you go over the great divide.
Always give a word or a sign of salute when meeting or passing a friend,
even a stranger, when in a lonely place.
Show respect to all people and grovel to none.
When you arise in the morning give thanks for the food and for the joy of living.
If you see no reason for giving thanks, the fault lies only in yourself.
Abuse no one and no thing,
for abuse turns the wise ones to fools and robs the spirit of its vision.

When it comes your time to die,
be not like those whose hearts are filled with the fear of death,
so that when their time comes they weep and pray for a little more time
to live their lives over again in a different way.
Sing your death song and die like a hero going home.

Chief Tecumseh (1768-1813) 

Chief Tecumseh (translated as “shooting star” or “blazing comet”), led the Shawnee tribe and saw his people’s lands, culture, and freedoms threatened by the aggressive white settlements. I wonder if we are related.

PS. Nick & Duncan — my two dudes — if you are passing by, please leave me a comment. I’d love to hear from you.

Tags: ,

25 responses to Brain surgery — a philosophical dilemma

Georgina May 19, 2022

You’re right about everything. ESP the bit that there’s only one of you. I’m so lucky to have that ONE in my life!

Claire Greenlea May 19, 2022

GRRR…Why doesn’t somebody have a truly functional Magic Ball?

Kev D May 19, 2022

Beautifully put – and that piece by old Chief Tecumseh had me in floods.

Jill May 19, 2022

A dilemma like no other however, would the ‘tramp’on my doorstep have changed anything in his life, for a longer, less fulfilled one?
I doubt it ;0)

johnboy France May 19, 2022

Hello Kevin
The truth is nobody knows the best course of action, it’s a dilemma, the first thing you do when you find something you have lost is to stop looking for it, my personal feeling is, if surgery is an option then that offers opportunities you did not have before.
One of the problems we have is that we are all different.
I do not like Bull-fighting I think it is very cruel, I try to put myself in the position of the bull.
If I had to be in the Bull ring and the matador was trying to kill me, he better look out because I will do whatever I can to kill him.
Let the Matador be your tumour, I don’t think vegetable smoothies will cut the mustard.
you are intelligent you may be terrified as any sane person would be, we are all rooting for you, get in the bull-ring Kevin surgery is your best option.

bonne courage
Johnboy France

    Ragged Clown May 23, 2022

    Thanks, Johnboy, for your good wishes. I don’t find violent metaphors useful though. I’m not in a battle and there is no matador that is trying to kill me. There is no ring.

    My body has a malfunction that I would like to repair if possible but if the act of repair causes more problems than the broken part, I’d rather live with the malfunction and enjoy life for as long as I can. Either way, I will need love and care and violent thoughts won’t help me find those.

Lucie Johnson May 20, 2022

Hi Kevin,
What a great blog!
Wishing you lots of wisdom as you make your treatment decisions. It is hard when things are so uncertain, when you can’t even know exactly what is the nature of your tumor. It is all a question of probabilities balanced with quality of life considerations.
Trying to know and understand is my way to cope also. But nevertheless, these choices feel like investing in the stock market. “So, how much risk do you want in your portfolio?” my financial adviser would ask…
I was glad to read you most likely do not have the blastoma tumor variety, so you may be looking at something with better prospects.
I am certainly cheering for that, and wishing you many more great philosophical discussions with strangers, and many good day-to-day times…

    Ragged Clown May 23, 2022

    Thank you for your kind words, Lucie. I like the stock market analogy and I do think of my decision in terms of the risks I face in each scenario.

    I have a consultation this week and, hopefully, I will learn enough to make my investment decision wisely! If not, I will be rolling dice!

Betty Maaskamp May 20, 2022

Dear Kevin, it is encouraging to read that you are living philosophy every moment. I am just reading a small book by a Dutch Astrophysical Professor, Peter Barthel. He tries to answer the question from a seven year old boy put at the 400 year celebration if the Uni of Groningen. He asked: Professor, does God exist? I wish there was an English translation. Two great statements: ‘believers should become a bit more sensible, sensible people should have a bit more faith’ (Barthel, 2019, p.94). And:’God is that which is good and beautiful in this world, which we discover together with wonder and trust in the future, which holds us responsible and which we must share – nothing more and nothing less’ (Barthel, 2019, p.95).
From: Professor, bestaat God? Peter Barthel, Ansterdam University Press B.V.

    Ragged Clown May 23, 2022

    Thank you for this lovely image, Betty!

    I do agree with Professor Barthel that this world is beautiful and we must learn to share it and we are responsible for its preservation. I’ve always gazed at the world with wonder and a desire to learn its secrets.

    Good luck with your studies, Betty!

Dianne Pagani May 20, 2022

Once again beautifully written Kevin and you will do what is right for you and your family.

Lilli May 24, 2022

Love your beautiful, enlightening blog, Kevin, and feel terribly honored ? The toughest decisions ~ to make with your team and then, ultimately, your inner voice will guide you.

Taking a long walk before my brain surgery, I came across a black bird snared in fishing wire, all tangled up within a shrub. I raced home for my husband, gloves and a sharp knife.

When we returned, the poor creature was still there, its call weakening. While cooing to it, we were able to gently maneuvered its wings and frail legs to set it free. Oh, to watch it fly! ?? Took that as a sign that all would be well (enough) … and it was … well-enough.

~ Lilli, whose family nickname is “Bird” ??

    Janet May 25, 2022

    This is lovely. Thank you.

Janet May 25, 2022

Thank you for these posts. As I read this one, Stephanie S came to mind. Those of us who found her writing at just the right time will never forget her honesty, generosity, insight, and way of expressing things we felt but hadn’t words to say. Though I was not ill, her words helped me have conversations with my very ill and reticent mother. I still refer to some of her writing occasionally. I expect the same will come from your posts about your tumour experience here and on SP. Best to you all.

    Ragged Clown May 26, 2022

    I learned a lot from Stephanie too. It was from Stephanie that I learned how useless the violent metaphors (”we’ve got to fight this”) are. Stephanie said that her body was sick and needed care. I do too.

Janet May 25, 2022

Accepting that the unknown is truly unknown has been one of the hardest things for both my ill family members and myself as their helper. You cannot know what will happen following the surgery unless you have the surgery. It is surely a gamble. My little contribution to the thinking process here is that if surgery is to be done, sooner is probably better than later–waiting to see what happens without surgery might mean that surgery would be a less viable option should you decide you ARE willing to try it later. Your doctor can confirm this. Best to you as always.

    Ragged Clown May 26, 2022

    We just back from a visit to the neuro. He gave us a better picture of exactly how much is unknown. It’s a lot.

    So now the ball is in our court and we must decide with what little data we have. But still, we must decide.

Lalladeedaa May 27, 2022

I will share with you some of the most inspirational words by a very wise man who scaled some academic mountains with me.

The esteemed Clown said on the 4th of September 2021 ‘I can’t quite find the right snappy conclusion. The best I have so far is Meep! Meep! Motherf*cker!’

So. Whether you pull a Roadrunner or gamble on a Wile E. Coyote plan, just keep on Meep!-ing.

      Claire ATX May 27, 2022

      Laughing in Texas in early morning!

Leave a Reply

Your email address will not be published.