Posted by: cg00n | October 13, 2020

That’s Crazy Enough, thanks

Now, where were we? Oh yes… that was a pretty crazy year too, come to think of it, but 2020 has really taken it to a whole new level – for all of us. Our lives have settled down into a comfortable new normal, and I’m hoping that is true for all of you, dear readers.

The year started off normal enough, and the dreaded covid-19 was a little late getting to our part of the world. A managed to fit in a trip to see us just before the Monty Pythonesque foot descended from the clouds; another few days and she would probably still be stuck here.

Living, as I do, in a more or less rural area of Canada, far from any major transportation routes or hubs, the fear and angst gripping so much of the rest of the world is mercifully passing me by. I know a few people who have had a dose of covid-19, but none of them live nearby, and I am not aware of anyone in my own extended circle of contacts who has died. This is a damned good bubble we’ve got here!

Speaking of feet, my own is pretty quiet these days, although there was one unnecessary panic in the early summer. A sore lump had formed on my heel, mere millimetres from the original tumour site. The meditation practice must be working well for me because my reaction to this was “huh”, rather than anything more dramatic. Having been through roughly 12 years of on-and-off guerilla warfare with melanoma I feel as though my doctors and I have the upper hand (or foot). Anyway, by the time I realised that the lump wasn’t going away it was possible to get an appointment with Dr. G, so a couple of weeks later I showed up at the hospital. He took one look at it prounounced the lump a callus. That was the happiest I have ever been to hear a callus remark. As a result I have been babying it with various cushioning dressings and it has now more or less subsided again.

As for the eyeballs, my left eye is getting a bit fuzzy and dim, but that appears to be due to a cataract. The optometrist feels it is “premature” to get this dealt with now, especially since the hospitals have more urgent concerns. I find it a bit weird to have my eyes giving me different information, but that is merely another inconvenience. Apparently either one alone is good enough for a driving license, a fact which I find mildly alarming, actually.

That’s about all the drama in life related to my health, if you don’t count nearly drowning myself in the Atlantic Ocean when I flipped my sailboat a few weeks back. Thanks to some observant and helpful people on shore I suffered nothing worse than a mild case of hypothermia and more serious case of embarrassment. The boat’s OK too, thanks for asking.

News Roundup

I don’t do as much reading about melanoma and depression/anxiety as I used to, but interesting news trickles in at the rate of about one piece per month. In particular, the Science Daily Skin Cancer section provides much useful information.

Anyway, for the sake of the archives, here’s this year’s editor’s picks.


Posted by: cg00n | December 4, 2019

The Land of the Living

Uh … HI 😬  Remember me?  I know it’s been a long time, but I’m pleased to report that my life and health have been good.  Just insanely busy!  Want to know why?  I hope so, ‘cuz I’m about to tell you.  Grab a drink and get comfy.

Buddhist BS

Back in 2018 accusations of impropriety began to surface regarding the Sakyong Mipham Rinpoche, spiritual leader of ShambhalaP and I were involved with a Shambhala meditation centre near where we live, but we never paid a whole lot of attention to the religious aspects of the organization, or indeed of any other organization.  We view Buddhism (of which Shambhala might be said to be a sort-of lineage) as something like a self-help program that has been running for a long time.  In any case this is not the first time this has happened to Shambhala:  in it’s brief history all three leaders have been accused of misconduct.   Nothing new to see here, so we let the organization get on with damage control and went back to meditating.

For me it all got real on September 12 2018, shortly after the release of the Buddhist Project Sunshine Phase 3 Final Report.  In addition to the sexual abuse allegations it was becoming clear that the Sakyong was siphoning off large sums of money intended for Shambhala’s ongoing operations.  For the director of our Centre this was the last straw.  He had been a keen Shambhala follower for many years, but this was Too Much.  A community meeting was convened to which he suggested 3 alternative futures for our Centre:

  1. Stay with Shambhala
  2. Transition to a non-denominational Buddhist centre
  3. Close

A few people suggested more nuanced approaches, but the general sense was that we should go for number 2.  A Transition Working Group was formed consisting of anyone interested (including me) and a meeting scheduled for the following week.

The group members turned out to be something of a motley crew.  Seven (including the director) had been with Shambhala for some time but were heartlily sick of the Sakyong.  Two were seasonal snowbirds, urging a thoughtful and gradual approach to separation. Four (including me) were  primarly concerned about community continuity and fairly agnostic as to the outcome.  The other two had helped set up the Centre a decade or so ago, and had now shown up out of the blue to try to steer us back towards Shambhala:  let’s call them the Jokers.

There was an agenda for the meeting, but I don’t remember ticking off any items.  The Jokers started by questioning whether or not there was a real “consensus” at the Sep. 12 Community Meeting (which they had missed), whether the TWG was representative, and whether all the members were legitiimate (citing conflicts of interest etc.).  Things got quite heated, and at the end of the meeting the director and his wife resigned, taking the view that there was no hope of progress.  Nevertheless, a second meeting was scheduled for a week later.

Several things happened during that week:

  • One more person bailed out, citing a “complicated” relationship with one of the Jokers.
  • A number of emails were exchanged in an attempt to make some sense of what had happened,
  • I had retinal surgery, and was confined to a face-down position on my bed for 7 days.

As a reult of the face-down attitude, I missed the second meeting, and delegated P as my proxy.

Meeting number 2 was, if anything, even more interesting.  The group now consisted of 12 people.  A vote was called on the question: who is in favour of pursuing a non-denominational centre?  Six people voted in favour which, as you will note, is not a majority.  Three more people then proceeded to resign.  They all had considerable history with the Jokers and no desire whatever to revisit it.  When I heard P‘s report my initial reaction was to join the exodus, but she (bless her) talked me out of it.  Instead I took the (retrospectively crazy) step of calling some of the departed and suggesting we put together a proposal that I, as a member of TWG, would take forward.  That way we could work without constant badgering from the Jokers.  Our splinter group was dubbed the Group of Five, for want of a better moniker.

At the third TWG meeting (now down to 9 members) I floated the G5 plan which met with approval from all except the Jokers.  More wrangling over procedural and legitimacy issues ensued, and three clear factions emerged:

  1. The G5 (aka ME)
  2. The agnostics
  3. The Jokers

The G5 got to work on such nuts-and-bolts issues as a suitable name, a non-profit society status, a logo, framing a mission statement and so on.  We met once a week for several months puttling together ideas, marshalling resources, and plotting strategy.  Our deliberations were kept pretty quiet to avoid giving the Jokers any way to exploit our vulnerabilities, which led to some people (including the former director) perjoritively calling us “secretive”.

My job on the TWG was to carry the banner, and attempt to convert some of the agnostics to allies.   The now acting-director of the Centre remained sensibly aloof, not wanting to be accused of bias when TWG finished its deliberations.  One more member quit as the October weather started to turn nasty, and our two snowbirds flew southwards for the winter.  And then there were six.

An unanticipated result of the G5’s comparative secrecy was the rumours that began to circulate that the TWG was in thrall to the Jokers and that nothing much was getting done.   To dispel this sense of hopelessness the TWG hosted an “information evening” to which the whole community was invited.  We put out pizzas as bait 🙂 and managed to get a fairly good crowd.  The G5 used the occasion to hand out fliers which outlined our activities and goals.  The Jokers made a short statement urging everyone to keep the faith.  It seemed like most people left with lighter hearts.  P and I followed this up with a Christmas season party, advertised as a fundraiser for the “new centre” proposed by the G5.  This, too, was a great success.

By the time 2019 dawned we had official Society status, and the G5 proposal was more or less complete, although revisions continued for another three months.  Still to be determined, however, was how to get the community involved in accepting it, possibly over the Jokers’ objections.  Protracted negotiations led  to an agreement that the Jokers would submit their own proposal, that members of the community would be invited to come up with their own, and that all would be presented to the community for review, feedback and (eventually) a decision around March.  The finish line was within sight!

At the review and feecback meeting, the Jokers had a very short, superficial document that was more personal plea and exhortation to the faithful than concrete proposal.  Essentially it argued that Shambahala was in the throes of a major reinvention, that most of what the community wanted would come to pass via this process, and that we could “embrace” the Sakyong as we would embrace a son in a mutual healing exercise.  Needless to say, the G5 felt that more justification was needed for the Jokers’ position.  We revealed a point-form version of our proposal, still reluctant to present much of an attack surface.  No other proposals were presented.  It was clear that the outcome of the meeting was not going to result in a single, unified vision of where the Centre should go.

A final community meeting was held a couple of weeks later.  The G5 won the toss to decide who would present first, and I got to lay it on the community.  There was an expectant vibe in the air.  The Jokers were called to reveal their plans which turned out to be … nothing.  They effectively said “we have no proposal; just some considerations we would like to lay on the table.”  We were, to put it mildly, stunned.  After six months of wrangling, frantic preparations, reams of documents, contingency planning, and delicate diplomacy we had won the war without a final battle!

The old (Shambhala) regime formally ceded control of the Centre to the new regime on May 1st, and we held our Grand Opening on May 19th – Vesakha Day in the Buddhist Calendar.  Since then we have run quite a variety of programs, classes, and regular meditation sessions.  Our membership seems to be happy, and we are collecting enough rent money to keep us going.  Not all is sweetness and light:  the more dedicated former Shambhalians on the society’s board are much more conservative than I was expecting, and this has resulted in some misunderstandings and actual differences of opinion about future directions.  This is a work in progress, but mostly a happy and fulfilling one.  We will hold our first AGM early next year at which time the board membership will change to some extent.  With any luck, after that I will be able to kick back and relax a bit more.

It’s a good thing I learned to meditate:  all this Buddhist BS is enough to drive me crazy.

The Eyes Have Had It

The retinal surgery I mentioned in passing was to mend a retinal tear that occurred in late summer, 2017.  I suddenly acquired a blank spot in the centre of my right field of vision.  When it didn’t sort itself out I sought out an optemetrist who diagnosed a retinal burn from inadequate precautions taken while watching a solar eclipse.  However, he referred me to an opthamologist who did some more elaborate tests and decided the problem was that a small piece of retina had torn away from the rest leaving a hole.  He, in turn, referred me to a retinal surgeon.  Some months later I got an appointment for a consultation with the surgeon who agreed that I needed repair surgery and put me on his wait list.  My slot finally came up in October 2018.

Although I was technically conscious for the procedure I (thankfully) remember very little.  Whatever was in the drug cocktail they injected into me was Really Good Stuff!  I floated through the whole thing with a thin, opaque sheet over my face and without a care in the world.  This meant I could not see the needle they stuck in my eyeball with which to draw off the vitreous humour inside.  After that, I gather, they stuck some sort of tool into the eyeball to do something to the retina to allow it to stretch and settle agaist the back of the eyeball.  Finally they injected some sort of liquid, leaving a bubble which I was intructed to maintain in a position where it put pressure against the damaged bits of the retina while it healed.

Seven days of face down time ensued, where I did little but lie with my head over the edge of the bed, supported by a massage table kind of donut-shaped pillow.  I ate this way, slept this way, watched endless YouTube videos to pass the time, and got vertical (with head tilted to face the floor) just long enough to stay clean and avoid terminal stiffness.  A week in bed sounds very relaxing, doesn’t it?  Frankly, I don’t recommend it.

Once I was up, the doctor recommended that I kept the bubble in place on a best-effort basis.  It was a weird underwater view through that eye.  After a week or so I could see round the edges of the bubble.  A while later, a horizontal gaze produced a semi-submerged effect, with the top part of my vision fairly normal and the bottom part still under water.  Eventually the bubble shrank away entirely.

A year later my right eye is as normal as it will ever get.  There is a small blind area near my centre of vision, and objects are somewhat distorted around it.  This makes reading and fine work much harder than it used to be, but I am still perfectly safe to drive (or at least as safe as I ever was) and generally lead a normal life.  For this I am profoundly grateful!

The other shoe may yet drop:  my left eye has characteristics that make it a good candidate for similar treatment.  For this, not so grateful.

News Highlights

With a one-and-a half year backlog of material on hand, i don’t want to overwhelm you.  Quite a lot of it is probably out of date by now, anyway.  I will put all the links in the References page, but for the purposes of this (already over-long) bulletin here are the main points of the news:

For those of you who are curious about the Shambhala scandal(s)

Melanoma Specific

Cancer in General

Mental Health

Bodily Health

That’s plenty to be going on with.  I’ll try not to leave it so long next time.  Wishing you all continuing wellness, and a peaceful & happy Christmas season!

Posted by: cg00n | August 9, 2018

Teach your children well

Posted by: cg00n | June 9, 2018

A Spring in my Step

Hello Folks!

Long time, no write.  I’ve been waiting for something dramatic to happen, but life has been boringly normal… and I’m lovin’ it!™

A significant anniversary occurred on April 21st.  One decade previously was the day I got the Bad News.  This year the four-letter “C” word is hovering in the air.  Not that I’m counting any chickens just yet.  Eggs can look deceptively benign.

The last time I had a consultation with a doctor related to the melanoma was mid-March.  At that point there were no new lumps and just a few BCG pustules gradually shrinking away on my foot.  Every so often I get a little itchy spot on the leg, but it subsides in a day or two.  If these things popped up anywhere else I’d say they were insect bites, but I rather suspect that there is some sort of immune system thing happening, like hives or something.  The pustules are still just about detectable and there is one other minor lump which is probably scar tissue (Dr. G wasn’t sure, but he wasn’t worried either.)  My dermatologist couldn’t find anything to complain about, and a PET scan revealed no suspicious activity.

For what it’s worth my dentist, my hairdresser, and my guru gave me a thumbs-up too.

The only fly in the ointment is that I seem to have a small tear (as in “rip”) in my right fovea.  The evolution of this is quite interesting.  Apparently, as one ages the jelly-like glop in the eyeball becomes less viscous.  However, it doesn’t do this uniformly, so there are often sort of lumps of denser material floating around.  In my case one of these was attached to my retina.  When it decided to float off (for some reason) it took a bit of retina with it.  Ominously, I have a similar glob attached to my left retina too.  The effect of this is to leave me with a small blind spot right in the middle of my vision, and a pincushion effect in the area surrounding it.  I can no longer read with that eye, but my general vision of my surroundings is OK.  At some point (probably around September) a retinal surgeon is going to pull the ragged edges back together and inject some gas into the eyeball.  Then I will have to spend a week face down 24/7 so that the gas bubble presses the retina back into place until it heals.  At that point I should have about 80% of vision back in that eye.  I am actually quite surprised I’m not having anxiety over going blind.  All that meditation seems to have done me some good.

A. had a rough time with her thesis project just before Christmas and decided to take a leave of absence from January until April (inclusive).  It struck me that this represented a rare opportunity.  It’s not like we see a lot of her these days, what with the 1300Km commute etc..  She had long wanted to see the bits of England where I spent my youth (dungeons, torture chambers, labour camps, British Rail cafeterias etc.).  This seemed like a good time for the two of us to take it in, so we spent two weeks there in April.  P. was content not to do so much walking, so she stayed at home.  We managed to connect with a whole bunch of far-flung relatives and a few good friends with the aid of many train rides and much excellent beer.  As luck would have it, our trip more or less crossed paths with a couple of our close Canadian friends, so all four of us were able to spend a beautiful day exploring Durham together.  It was a wonderful trip, from which my feet have almost recovered.

Now that I’m back it is almost time to get a boat into the water.  Last year we bought a small sailing dinghy for A. to play with when she’s home.  This year, what with my leg being all healed up, I think I will ride it out to sea.  You know the expression: “three sheets to the wind”?  Stay tuned.  I might be the first person to cross the Atlantic in a dinghy … by accident.

News Roundup

First, let me tell you about three non-fiction books P. and I have been working our way through.

There has been a lot of hype about Jordan Peterson’s 12 Rules for Life, so we thought we’d see what all the fuss is about.  After reading the book, we’re still wondering.  It’s an OK read, but there are lots of types and it is quite repetitive in places, suggesting that Mr. Peterson is being paid by the word.  His rules (listed on WikiPedia) are all fairly commonsensical and little original thinking is evident.  However, it is not a bad reminder that being a Good Person is not necessarily all that hard.

The Beautiful Cure by Daniel M. Davis is all about the human immune system, our current understanding of how it works, and the primary researchers who figured it out.  To borrow a well-known phrase:  “it’s complicated”.  I found it very helpful in understanding how my own treatments work, and there is a very illuminating discussion of vaccine adjuvants which ought to give any anti-vaxxer some food for thought.  There is enormous potential for immunotherapy in many areas of medicine – all very exciting.

Finally, a real eye-opener is Amy Chua’s Political Tribes.   The central thesis is that family, racial, kinship, and other such connections between humans often trump (so to speak) national identity, and that the failure to take this into account has led to many very poor decisions in international affairs.  There is a chapter apiece on Vietnam, Afghanistan, Iraq, and Venezuala.  The last chapter is devoted to political tribalism in the US, which promises to be a fascinating read when we get there.   The book is a relatively easy and engaging read, but it doesn’t give me much optimism about the human race.  Still, highly recommended.

And now for the story spike:

(Note 1: The Beautiful Cure explains some of this stuff.)

That’s it from me.  I’m off to avoid a sunburn and seek enlightenment elsewhere.

Good health to you all!

Posted by: cg00n | December 26, 2017

Christmas Cheer

So, here we are again, ho, ho, ho!  The freezing rain has now moved on to improve others’ festivities, and the wind is picking up towards the predicted 100KPH gusts expected later this afternoon.  We have a stack of logs and gallons of wine to see us through any power cuts, and we are settled in for a nice, quiet Christmas day.  What better time to reflect on the past year (at least since I posted in April) and let my loyal followers know that life continues in a very positive way.

The BCG+IL2 treatments have continued to good effect.  A big turning point was early July when I came down with another dose of cellulitis.  It took a few days to identify this, coming as it did a week or so after a treatment which produces similar symptoms.  My leg (especially around the heel) was very sore and inflamed.  The first 10 days of antibiotics did not clear it up, which was a little worrying.  However, a few more days with something stronger knocked out the infection.  By way of after-effects, my amped-up immune system mounted a spirited defence of just about everything leg-related.  Doctors G and H were most impressed in a “Holy Cow!” sort of way.  They were concerned that adding more BCG/IL2 fuel would produce rather too much immune response.  I can’t actually recall if I have had any injections since then, but the remaining lumps have beaten a retreat so there are just a few icky-looking pustules left now.

Assuming no new lumps show up the lack of treatments will continue, I will get a PET scan in the early new year, and we will biopsy anything that still looks suspicious.  It is quite possible that all there is left are a few TB-infected spots, and if that is the case we will move to a wait-and-see regime.  This is all quite awesomely good news!  A better Christmas present I could not wish for.

News Roundup

Here it is, in one great, disorganized disgorging:

That’s all I have to say about that for now.  The storm has blown through and we are still here, late on Christmas day.  I hope you are in good health and spirits, and that you remain so until I have a chance to renew these wishes!

Buddha figure in a snowdrift.

Posted by: cg00n | April 2, 2017

Sproing is Sprang

In the last episode, US Pres #45 had just been elected and I had just embarked on a course of treatment involving BCG.  So the good news is that the BCG treatment appears to be working, with respect to the melanoma, if not the new US President.

Just two treatments with BCG along with the ongoing IL-2 regimen was enough to clobber a fairly large lump on my calf.  It took several months and was somewhat messy in terms of having to re-dress the thing every day, but it has Gone which is a happy outcome.  We have now started treating 3 more lumps which are also disintegrating messily.  The only one that is giving me some problems is the one on the top of my foot, first introduced to you in February, 2014. It has almost gone away several times, but somehow always fights its way back.  Late last year it got a small bacterial infection which made kneeling to meditate a truly excruciatingly painful experience.  This time I hope we can see the bugger off, but (as previously mentioned) it is a messy process which makes putting shoes on and walking any distance an ooze-inducing activity.

Even if this works really well, it will still be some time before I am free of all my bi-weekly injections.  My next appointment is coming up on Wednesday, and that will leave me feeling pretty shagged out until the weekend.  I watch a lot of old TV shows to pass the time.  Did you know that YouTube has a pretty good collection of Laugh In, and even a few That Was The Week That Was episodes?  Very interesting … but stupid.

My life may be a garden of rose bushes, but sadly I have lost four friends since the last time I blogged:

  • Ms. KT of Calgary has died.  This was entirely expected, but very sad all the same.  She was in her early 40s; much too young.
  • Mrs. SH of  Bowen Island BC died quite unexpectedly in December after a short illness – a great loss to her family.
  • Mr. AK of Martin’s River NS succumbed in January to a recurrence of lung cancer.
  • Mr. DR of  Creston BC died in March after a long battle with ALS.

May they all rest in peace, and may the rest of you live long and healthy lives.  Buddhism looks at death as being just one more phase of existence, a view that I find very comforting.  When this whole saga started for me, I was very afraid of what was to come.  Now I feel quite phlegmatic.  We’ll see how well that holds up when the guy with the scythe is standing beside my bed.

We have had several mild doses of spring here, but each one seems to be a teaser.  Today it’s snowing again and the coming week doesn’t look promising.  Work on various projects proceeds in fits and starts.  Still, it encourages me to meditate:  beats standing naked in the snow screaming at the clouds.  The family is all doing well, although P has had two nasty colds in tandem (which I have somehow managed to dodge).  A lives in Toronto these days, working on a MSc degree from U of T.  All of us seem to be pretty content with life right now.  We wish the same for all of you.

News Roundup

It’s time for the part of this posting that may actually be useful and that also keeps me safely off the streets for a whole afternoon.  As always I am indebted to my faithful unpaid research assistants throughout the world who help to keep me up-to-date!  Cheers, all.

Too Much Sun



Understanding the Beast (and giving it a really bad time)

Feeling Better


Also please note that I have added some links to the BlogRoll.  Most of these are to melanoma support and information websites.  However, one link deserves special mention:

Understanding Health Research

This is a tool that helps interpret health research papers which are often quite impenetrable.  Give it a shot and let me know if you think it a worthy addition.

Have a great summer!

Posted by: cg00n | November 9, 2016

The Nature of Reality

According to Mahayana Buddhism, we suffer because we are confused about the nature of reality.  What better proof of this is there than the 2016 US Presidential Election?  As for the theists among us, all I can say is that I hope that God’s ineffable plan is really good!  Interesting times are indeed upon us, perhaps thanks to the Chinese, and you know that saying about “sleeping next to an elephant”?  I think it’s restless.  Dickens could hardly have described my feelings better:

It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to Heaven, we were all going direct the other way – in short, the period was so far like the present period, that some of its noisiest authorities insisted on its being received, for good or for evil, in the superlative degree of comparison only.

So, in a more uplifted spirit, I am happy to announce that today was the first day of a new treatment regime.  My Interleukin-2 injections will continue, but now I will also get injections of BCG, an attenuated TB vaccine.  The potential side effects include all the ‘flu-like symptoms I get now plus tuberculosis 🙂  Fortunately, the latter possibility is extremely remote.  Dr. G said that, were he in my position, he would definitely be trying this new mix.  BCG is also used to treat e.g. bladder cancer.  The way it is supposed to work in my case is to provide an immune system target which is more “memorable” than IL-2 can manage.  If a skin lesion gets a dose of both IL-2 and BCG, the hope is that there will be a more lasting immune response than I get with the IL-2 alone, and this may be enough to get rid of the melanoma completely.  We can but hope, and I am cautiously optimistic.

Many of the people who have been getting the IL-2 treatment appear to be more-or-less cured.  I am not quite that lucky, but life is a whole lot better than it used to be.  The switch from surgery to topical injections certainly made a huge difference to my state of mind when we started four years ago.  Not so long before that I seemed to be running out of options:  now I have several, which is a Good Thing.  However, I have also put a ton of work into stabilizing my state of mind, and today found myself in the unusual position of being calmer than P in the face of momentous political events.  This I count as a major accomplishment.  Coincidentally, P and I will be at a mindfulness retreat in Ontario in the near future, which I think may prove beneficial right now.

News Roundup

Just for once, the in tray is refreshingly uncluttered:

And finally, my good friend Ms. KT of Calgary remains very ill in a hospice:  send what positive vibes you can spare in her direction.

Wishing you all peace and prosperity – good luck!

Posted by: cg00n | August 2, 2016

The Summertime News

They say: “no news is good news”, so mine has been good for a long time. However, now that there is a little news it turns out that it is still good.  Cutting to the chase:  I have just had my annual PET scan and it reveals no significant change from last year.  So, I’m probably good for at least one more 🙂

Two ancilliary pieces of news are basically neutral in tone.  The first is that I will probably be getting the Big Lump surgically removed (and probably a small skin graft) sometime RSN.  It has been a while since I’ve had any surgery, at least partly because it appears that the resulting inflammation may provoke more melanoma activity.  However, we can be prepared for this to some extent which was not so much the case in the past.   Furthermore, the motivation for doing this is to analyze the tissue to see if we can figure out why I am not getting a more “durable” response to the Interleukin-2 injections.  About one-third of IL-2 recipients seems to end up more-or-less cured; another third don’t seem to respond at all; and the rest of us need ongoing treatment.  Research has now advanced to the point where they may be able to pick apart the reasons for all this, and to adjust treatment accordingly.  So, there may be more news in the next few months – which I hope will also be good.

The second piece of news is that a proposal to try me on a combo therapy of IL-2 (as at present) + an anti-PD-1 drug looks as though it is going to fall through.  I met the oncologist a few days ago, and his reasoning was interesting.  I thought anti-PD-1 drugs take the brakes off the immune system so that it puts up more of a fight againt e.g. cancer.  This is only true as long as the drug is being administered; once you stop getting it, the brakes go back on.  However what I did not know was that this only seems to work once – at least in my context.  The proposal being floated was to see if the comination of drugs would knock out the melanoma completely, which it might do.  If it fails to do that, I can still go on taking the IL-2 which will probably keep things under control BUT if things ever get out of control the anti-PD-1 therapy will not help.  The oncologist wants to keep the anti-PD-1 drugs for a next-line-of-defence scenario, rather than taking any chances.  That makes perfect sense, but it is a bit disappointing.  It also highlights the gap in my understanding:  why do anti-PD-1 drugs only work the once?  I’ll have to get back to you on that one.

Anyway, it’s been a great year so far.  I did manage to drive myself to the edge of an anxiety attack back in March (obsessing over some tricky car-related problems that I had to fix) but in general I’ve been in a good mood most of the time.  I continue to meditate on a daily basis and to bring as much of the practice into my everyday life as I can.  Living in a peaceful and beautiful part of the country well removed from any major beaten tracks is also a great help. P and I drove down to a Citroen Rendezvous in Saratoga Springs (upstate New York) where we were joined by A for a few days.  It was seriously hot, but a lovely little trip in spite of that.  A is coming to visit in a couple of weeks:  I just hope that won’t coincide with the leg surgery!  P is seriously into Tai Chi, and has just started playing with Ikebana, two more highly meditative disciplines.  Enlightenment is just around the corner.  Maybe.  If we pick the right corner, perhaps.

In further good news, the brother of Mr. R.J of Calgary has undergone a second successful bone marrow transplant which ought to keep his blood cancer in check for another few years.  On the other side of the balance,  Ms. K.T of Calgary is suffering from terminal colon cancer; she is, however, coping very well, a source of great inspiration for me should I ever find myself in a similar position.  My very best wishes go out to both.

Finally, assisted dying is now legal in Canada!  In June, Bill C-14 received royal assent.  This is a great relief to many of us who have no desire to die painfully for no particular reason except that someone else thinks we should.  With any luck it will also spur the development of better palliative care and hospice living.

After the break: News of the World … of oncology.  Stay tuned.


News Roundup

Here’s your cure for the summertime news, in broadly chronological order with a few witty remarks thrown in.

Well, that empties the news bin for another 6 months.  There really is a lot going on which might help me (and hopefully others:  I don’t want to seem selfish) live to an overripe old age.  Wishing you all excellent health, lives full of joy, and not too much sunshine.  Until next time ….

Posted by: cg00n | December 24, 2015

Winter Solstice

The blue, sunny skies of July have given way, once again, to the grey, cool, sometimes foggy environment of December.  “Enthusiasm” is not a word I normally associate with this time of the year, but I don’t get as miserable as I used to.  These days we have a very laid-back Christmas season, and the lack of expectations to which I must live up is a great relief.  A few coloured lights adorn the house and the artificial Christmas tree in the living room, and a few Christmas cards give the dining room table a slightly festive look.  A will be home tomorrow, flying in late enough that P and I can take in a party with some friends before going to pick her up.  So, our small family will be together again for the first time in 6 months.  That is a Good Thing, but I have learned to feel the presence of my friends and loved ones even when I am alone.  It would be great to see all of you more often, but I know you’re out there.

My unusually philosophical frame of mind is partly the result of a one-week retreat I was at recently.  Some of you may be familiar with Shinzen Young.  I find his approach to enlightenment refreshing.  He is in the process (multi-year) of taking a hard-nosed, scientific look at what all this “mindfulness” stuff really does.  Working with neuro-types at Harvard, he gets people to try various meditation techniques while they make themselves comfortable in an fMRI machine.  Unlike many of the traditional Buddhist traditions, his practices and explanations draw heavily on psychology and neuroscience, and largely dispense with what I regard as the baggage – the more elaborate rituals and ceremonies, the mystical language, the religious overtones, and so on.  It is something of a chore to learn new mind-training techniques when the ones I have more or less work and feel comfortable, but it is probably a good thing to disrupt my habits.  Familiarity breeds contempt, so it is all too easy to fall into a self-devised formulaic ritual which may reduce the effectiveness of one’s practice.  Furthermore, it is actually quite interesting to pay attention to habits of mind that usually go unnoticed.

Life has been easier to take since I started meditating, and easier still since I started on the IL-2 injections 3 years ago.  Trekking into the city every two weeks is a pain especially in winter, but the treatments are now very routine.   P usually dumps me at the clinic so she can go shopping.

Image0282 The waiting room has an inpiring  view (see photo), but I rarely get a chance to appreciate it for very long before being shunted off to an examination room.  I call P when the inaccupuncture (about 30 very small but still quite painful needles) is complete, generally in less than an hour.  Then it is home to snooze for the rest of the day and a couple of days of relative torpor thereafter.  There is a somewhat alarmingly large lump on the back of my leg, but the doctors are more curious than concerned, so I follow their lead.  Dr. G expects (“when, not if”) that I will start on some kind of cocktail or combo drug therapy this year, although the recipe is not yet finalized.

My “Life With Cancer” story is still unfolding.  Sadly, this is not the case for two people I know.  Adrienne Lotton, who I introduced to you about a year-and-a-half ago, died from her melanoma in August 2014.  It took me until very recently to work up the courage to check up on her.  Her blog has gone untended for some time, but her obituary is more recent.  In addition, our much-admired friend Bill Gilkerson died a few weeks ago after a long battle with a rare form of leukemia.   He greatly outlived the doctors’ prognostications and was receiving guests at his home until just a few months ago.

Both these people, as well as the brother of Mr. R.J of Calgary (last mentioned here 3 years ago and once more undergoing treatment), were treated with conventional, allopathic techniques and medicines.  In Adrienne’s case this did not produce the hoped-for cure or even much of a respite, but the other two have benefited greatly.  My next door neighbour, in complete contrast, swears by the use of hemp oil to treat cancer.  Other friends have found homeopathy to be very effective for what ails them.  What’s up with all that?

I am a great advocate of the scientific method as a way to discover how the universe works.  Conventional medicine makes use of this method to figure out what causes sickness, and to predict possible ways to alleviate it.  However, no one (in their right mind) claims to know everything about humans, how their biochemistry works, and how their psychology affects their health.  Most reasonably enlightened medical researchers will freely admit this and will be quite open to the idea that unconventional therapies may help.  There are several reasons why such therapies are not embraced by conventional medicine:

  • to make use of treatments that lack scientific support is to give them the same level of credibility as those that have scientific support, so even if “it looks like this works for some people, sometimes” doctors will be very reluctant (at best) to condone them until the science catches up.
  • to allow others to practice alternative medicine also gives it respectability and allow scientifically unsupportable claims to be made about it; many cases of fraud have resulted (dubious and expensive cancer treatments, for example) because there are no good criteria to separate what works from what doesn’t.
  • in some cases attempts have been made to verify unconventional therapies by scientific means, and the attempts have failed (homeopathy, for example);  further scientific experimentation is hard to justify.
  • without carefully controlled experiments, manufacturing processes, and so on, “natural remedies” (herbal extracts, naturopathic and health food products etc.) may contain almost anything which may do almost nothing or entirely too much (this food supplement, for example).

Obviously this list is not exhaustive.  Quackwatch is a great place to find out more.

All that said, any profession or discipline suffers from myopia or, indeed, outright prejudice.  Western medicine is largely driven by profit, and pharmaceutical companies are hardly beacons of unfettered knowledge.  It is the devil we know best, and there are several efforts (and here too) to improve it, but there will certainly be times when promising remedies are ignored because it is politically or financially convenient to do so.  So consider, for a moment, what the situation would be like if (say) “conventional” medicine was based on homeopathy:  how would we go about determining what works under what circumstances, what constitutes a therapeutic dosage and what the risks might be of getting it wrong, what might be the most effective lines of research into better treatments, and so on?

Science, or at least the application of the scientific method, is arguably the only reliable way humanity has devised to study our world and how it works.  It is the only “way of knowing” that has a built-in mechanism designed to weed out falsehoods.  Used properly it is a very effective tool and we disregard it at our peril.

I hope you enjoyed this Christmas Rant!  All rational discussion on the subject is welcome, and I promise that I will not censor any politely phrased comments you may have to offer.

News Roundup

Thank you to all who have contributed!  The continuous flow of hopeful news is a real morale booster.

(takes deep breath and dives into teetering pile of URLs…)


Cancer in general

 Other subjects

That should keep you busy over Christmas – which I hope you all thoroughly enjoy!  Thank you for staying with me over the years:  I really appreciate it.  Talk to you again in 2016.

Posted by: cg00n | July 8, 2015

Having Fun

As the saying goes, “Time flies when you’re having fun” and I can attest to the truth of this.  Somehow seven months have flown since I last updated this blog.  Did you miss me?  Be honest, now.

What’s been happening to me (in blog order):

Tomorrow I get to see my oncologist (Dr. Mc) and my psychiatrist (Dr. C), both of which appointments I expect to be more or less non-events.  I still have active melanoma and I still have occasional mental struggles, but in general I seem to be staying relatively healthy.

Last week I had a PET scan and Dr. H was kind enough to call me with the results.  Although there are still active areas, she said that if anything the scan is a little better than last year’s.  By way of treatments, I still go for bi-weekly IL-2 shots which still knock the stuffing out of me for a couple of days, but that still leaves me with quite a bit of time to waste on other pursuits (exotic cars, boating, plotting the overthrow of the government etc.)

Speaking of exotic cars, we took a quick trip to Toronto recently so mine could get a tuneup.  This is not the craziest thing I’ve ever done by way of automobile maintenance, but it does come close.  Saw A for a few hours along the way.  She is working as a lab research assistant kind of thing at Queens U. this summer.

Hardcore party people

Hardcore party people

A few months back I passed another decade marker in my lifetime’s progress.  Back when melancholynoma started I really didn’t expect to see this birthday, so it was a very special occasion.  P rounded up all kinds of people (not sure where she found some of them) for a surprise party. The place was quite packed for a while but by the time the photo was taken many people had wimped out, leaving the hardcore to finish the food and booze.  This we did with relish.  And guacamole. And other stuff.

Too much snow to plough

Too much snow to plough

Winter was only just over by the time the party happened. We were very nearly housebound a couple of times, and on one occasion needed a front loader tractor to dig enough snow off the drive so that it could be ploughed.  I was beginning to regret having ditched my X-skis a few years ago.

A short European cruise and visit to Ireland provided a most welcome break from the weather here.  The tulips near Rotterdam were colourful enough to keep us going for weeks afterwards.

Taking advantage of the miserable winter, P organized a weekend-long retreat at our local Meditation Centre.  Fifteen people came for a fairly solid 12 hours of meditation on a Saturday (including two mindfully-eaten meals) and a further 8 hours on Sunday.  We walked and sat a lot.  It is surprisingly hard to do this.  One uses all sorts of little muscles to maintain even a relaxed posture and, of course, once a muscle starts to get a bit tired and tense it spreads its displeasure to those around it.  I usually feel quite tired both physically and mentally by the end of that much meditation.

Throughout all of this I’ve been spending time on the Support Groups website.  My own problems seem much smaller when compared to what some of the people there go through.  It helps to keep my life in perspective, and practicing compassion is good for my non-soul.

And that pretty much brings us back to Christmas 2014.

News Roundup

I’m not even going to try to list all the stuff I’ve come across in the last six months.  Besides, some of it is probably out of date already.  So, here are the main points of the news:

The abundance of research and the number of potential new treatments for all that ails me is very encouraging!

Wishing you all a very happy summer … and beyond.  Re-read the Sun & Skin Survival Special and abide by the sound advice therein.  Take care.

Older Posts »