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.

sunset-panorama

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…)

Melanoma-specific

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.

Posted by: cg00n | December 26, 2014

The Sky Above Me

Unbelievable Maritime weather this Christmas!  It is 10C with sunshine,blue skies, and green grass here today.  I took a long-ish walk along a shore-hugging road, and watched someone out sailing.  What a wonderful feeling of vicarious freedom!  This was also the perfect excuse to use up the last James Bond movie title.  It was a pretty silly exercise, and I promise not to raise the spectre of its return in the future.

In the last episode P and I were about to depart on a cruise.  In this episode we have apparently returned, which is probably a Good Thing.  We had a wonderful time, but will have to cut back in the new year:  the deficit is getting too big.  Our lives seem to be full enough without too much travel, anyway.  In my case, I can spend a lot of time just sitting around doing crossword puzzles, listening to music, reading, dozing, taking the occasional walk.  It is wonderful that others explore new and interesting places, try new things, get active, and keep fit.  That’s just not me.  I have always found it hard to start new projects.  Even getting up in the morning is pretty tough.   Until a few years ago that caused me a certain amount of self-loathing, but I finally learned to accept that there is nothing wrong with living this way.  Since then I have been much more relaxed, happy, and content to celebrate and applaud the achievements of others.

I continue to offer advice and comfort to those in need in the Support Groups family.  Some days it is frustrating or heartbreaking, but there are also times when I can get someone to laugh, or to look for different solutions to their problems.  That is very rewarding – for me, at least; I hope it does them some good too.  There is a Skin Cancer group which I monitor, but not a lot of activity there.  Occasionally I point someone to this blog in the hope that it will provide some inspiration or at least information.  Online support was not easy to find when I started down this path.

As far as my own melanoma is concerned, everything is going very well.  Earlier in the year I (and my doctors) were a little worried about the frequency with which new lumps were popping up.  There was talk about more drastic chemo, all of which was somewhat anxiety-provoking.  However, my last IL-2 treatment involved only 10 injections, down from about 35 at the peak of the panic.  This is much easier to take!   Quite apart from having my leg feeling like an abused pin cushion, that much IL-2 in my system thoroughly flattens me for about 3 days.  Now I can actually start making modest progress on stuff within 24 hours.  Furthermore, the decline in lumps to inject raises the prospect that the number may drop to zero, at least for short periods.  That’s closer to a cure than I ever expected to get.

Speaking of cures … they haven’t found one yet.  But the progress is promising, as evidenced in the next section.

I wish you all a healthy and happy 2015, and expect to be around to share it with you!

News Roundup

Melanoma

Cancer in general

Mind & Body

Posted by: cg00n | September 5, 2014

ThunderBird

The summer has just flown by, and that’s what I will be doing later today.   A big, thundering bird will take me away from my first world 1% life and deposit me (indirectly) on a squalid Princess cruise ship which will in due course  return me to my very own squalor.  Sounds like hell, doesn’t it?  But, please: I don’t need your sympathy.  Really.  I’ll get through this somehow.

It has been a few weeks since my visit to the oncologist.  At that time we decided that I will stick with the status quo:  IL-2 injections every couple of weeks until the universe winds down.  That is a nuisance, but a fairly mild one.  It writes off a few days each month during which I am good for very little, and it hurts a Whole Lot when they give me the 30-ish injections, but that soon fades away and life resumes.  So, I continue to be well and mostly happy with my existence.  Spare a thought for those less fortunate than I.

Recently a couple of long-time friends made it out here for 10 days.  Fortunately they are fairly self-sufficient, since relying on us (me, in particular) for entertainment is a bit of a dead loss.    It was great to see them, though, and we did manage to go to a few places, see a few things, and eat a few good meals with them before they returned home.

That’s about all I have to report, which is probably just as well.  Do stay in touch, all of you,  and I wish you a gentle slide into the Fall.

News Roundup

Once more, my thanks for all the pointers to news articles.  Keep ’em coming.

Cancer

Melanoma

Mind

 Miscellaneous

Posted by: cg00n | June 20, 2014

The Living Sunlights

bad-sunburn

Sun and Skin Survival Special

‘Tis the sunshine season, although much of the Northern hemisphere may be in some doubt about this.  The summer solstice is upon us.  For many this is a time to frolic in the great outdoors in as near an au naturel state as the law permits.  For me it is a time to cover up and slap on the sunscreen.  For those of you with fair complexions, Nordic skin and especially red hair, mine might be a good example to follow.

Melanoma rates have been rising steadily for at least a decade  in the US, Canada, the UK,  and especially in Australia.  There appear to be two primary reasons for this.  The first is that the time we spend outdoors we wear fewer clothes than we used to.  If you look at pictures of people on holiday 100 years ago, almost all are wearing hats, the bathing suits leave everything to the imagination, parasols are not uncommon, and pale, white skin was considered a mark of high social standing.   The kids on the beach are wearing (more or less) street clothes and hats.

By 50 years ago a lot had changed.  Bathing suits were much more common and a good deal more revealing.  Hats and parasols were much less common, although the middle-aged and elderly still kept a lot of their skin under wraps.  In Europe, as post- World War II austerity wore off, a lot more people could afford to take vacations in France, Italy, or Spain where the summer sun beats down much more strongly than in Northern Europe.  In Canada the destinations tended to be The Caribbean, Florida, California, Mexico, Hawaii.

Reveling in the  outdoors with the sun on your skin was supposed to be good you.  Indeed, it is, up to a point (don’t get me started about the bugs, though) but there is a reason that those with a genetic history of living in the tropics tend to have darker skin than others.  Us gwai lo people have evolved to produce more vitamin D from less ultra-violet light, but this ability comes at a cost: our skin can be overwhelmed easily by the more intense sunshine at lower latitudes, and the damage can be very serious.

The second reason skin cancer is on the rise is that having a tan is now considered desirable, or even beautiful. The more of your skin you can bronze and the quicker you can do it, the better.  Not everyone can afford to spend all the time in sunny places to obtain a natural tan, which has led to the proliferation of tanning beds.  It turns out getting a tan this way is even worse than too much solar exposure and may even be addictive.  Figuring this out involved quite a lot of research, and there are clearly many people who dispute the results, or simply ignore them.

There is also a great deal of confusion over the use of sunscreen.  SPF values don’t apply to UVA, so they are not a very reliable guide to what products work best, and some people feel that the sunscreen ingredients are toxic (or at least highly suspicious) to the extent that one is better off not using them.  Sunscreen is quite safe and may be  a very good thing to do for your skin.

Our children are, in many ways, the most vulnerable when it comes to melanoma risk.  Not that they are likely to get it when they are young (although it does happen) but the skin damage lasts a lifetime and greatly increases the risk of melanoma later in life, which is why we are seeing so much more now.  They need to be  dressed appropriately, slathered in sunscreen, and when they are old enough taught how to take appropriate precautions.  Such precautions include not using tanning beds.  Many jurisdictions now forbid their use by minors, but this is a recent development.  Quite a lot of damage has already been done.

Having said all of that, getting outside is good for healthtrees and flowers and chirping birds all promote healthy states of mind.  I love being outdoors (except for the bugs).  Avoiding excess sun does not mean cowering in a basement until the autumn equinox.  I wear a hat, long sleeves, long pants and (horror of horrors!) socks with my sandals, and I use sunscreen on the bits of me that still see the sun:  my nose, forehead, ears, and hands.  This is probably overkill for most people.  Please pardon my paranoia:  UV can  encourage melanoma to spread.

 The US Centers for Disease Control (CDC) has a good summary of how to take care of your skin for the summer.

Melanoma can strike anyone, young or old, sun worshiper or not.  It is worth knowing how to spot the bad spots. To find out how much you know, try this quiz. I really hope none of you ever have occasion to worry, but prevention is easy.  A cure may prove quite elusive.

Legnotes

  • My recent PET scan reveals no unexpected melanoma activity.  It ain’t gone, but it is under control for now.
  • My recent tissue pathology report on the suspicious lump on my right breastbone indicates that it is benign.
  • Adrienne has run up a lot of travel bills for her treatment.  If you are feeling flush with cash, please consider helping her out.

News Roundup

Ah, the hell with it!  I’m going boating :-)  Have a great summer, all of you!

Full Summer Survival Gear

Posted by: cg00n | May 18, 2014

Olden I

Another birthday has just gone by.  The next one will be one of the big 0’s which, a few years back, I really did not expect to see.  So, perhaps this is a good time to look back on who I was, and who I am now.

Depression, anxiety, and the feeling that “I ought to be able to do better” were my constant companions for many years.  Coping with them was something I just did:  it’s just who I was.  The past looked pretty good, the present tolerable, and the future positively frightening.  Was I good enough to get a job?  To keep it?  Would I spend my life lonely?  Were we all going to die in some horrible catastrophe – war, plague, famine,  or whatever?  What would happen if I had a debilitating accident or contracted some nasty disease?   I spent many hours with counselors and friends looking for ways to help myself.  Perhaps more exercise would help: jogging, biking, hiking, dancing, sailing; or maybe a dose of self-confidence and focus a la Tony Robbins; a more solid relationship, or a new girlfriend;  a more rational working environment.  I tried all of these and none brought  more than temporary relief.  Eventually the lead-booted feeling of depression and inadequacy and the fear of total failure would return.  Medication eventually prevented the worst of the lows, but life was always an effort.   There were times when I felt really happy where I was, but it always seemed as though something beyond my control would happen to spoil it.  Needless to say, this fed back into the feelings of depression, anxiety, and inadequacy.

When P first suggested that we could afford to retire early I felt euphoric.  I would be able to get away from all the crazy work stress and devote my time to my own agenda:  putting effort into something really worthwhile, relaxing, catching up on my reading list, spending time with the family.  Just what I needed!  Everything would be OK when I could get away from all the things that were bugging me.  This idea sustained my last few working years while we socked away our  salaries and planned The Big Move to a quiet, semi-rural area by the sea.

The year of The Big Move was probably the most stressful of my life.  We disposed of huge amounts of possessions (although not nearly enough, as it turned out), bought a small, temporary home near where we hoped to build, packed up, and moved several thousand kilometres away from our friends and family.   Settling ourselves in was a major task.  Settling P‘s mum and my dad in was pretty much impossible.  The arrangements we made for them were always an awkward compromise for all concerned.  Tempers frayed and happiness was, once more, elusive.  It was with very mixed feelings that I watched my father die about 8 months later.

There followed a very tiring year as we got the new (bigger) house built.  With the help of a wonderful contractor and a lot of very competent trades people, the edifice gradually rose from the ground.  It felt wonderful to climb the ladder to an upper storey and bask in  the beautiful view.  Such basking was rare, however.  Most days were filled with all the minutiae of house construction and finishing.  We constantly seemed to be driving into the city to buy materials or fittings, or run after our parents.  Of course, A was in school and  had her own requirements for living.  Soon, I promised myself, things would improve.  Everything would come together into some sort of idyllic existence.

Just about the time we were getting ready for our second move in two years (from the small house to the newly built one) I got the diagnosis of melanoma.  This, of course, scored 11/10 on my personal catastrophe meter.  I was just about to be supremely happy in my new existence when events beyond my control screwed me over – again.  I had a very possibly fatal disease that might be quite uncomfortable and might require a lot of support from friends (absent) and family  (overwhelmed).   I had absolutely no idea how I was going to cope and on several occasions seriously looked into the possibility of assisted death or suicide as being the least bad option.  My life and my state of mind hit an all-time low.

In spite of all that, here I sit, six years later, feeling as fulfilled and content with my life as I ever have:  a whole new person, you might almost say.  Wassup with that?

Firstly, of course, the six years  did not turn out anywhere near as badly as I thought they would.  I did not die (in case you were wondering), and apart from the ongoing melanoma treatments I live a fairly normal, retired life.  P assures me that we are pretty secure financially, and A is all grown up and at university 2000Km away.  Our parents are now both dead.  All these factors have removed quite a load from the minus side of the scales.  On the plus side, we are well-established in our new (well, “nearly new” by now) home, we have good friends nearby, toys to play with, and fulfilling activities to make up for the lack of work.

Mostly, though, I think my outlook on life is radically different.  My sense of “self” is much more flexible now.  I no longer feel the need for some kind of future guarantee of happiness, or the need to make that guarantee for anyone else.  Everything I really wanted to prove in life has been proved or abandoned.  I still have quite strong opinions on various topics, but I am not as emotionally invested as I would have been in olden days, and (this is a biggie) I have learned not to spend as much time judging the opinions and actions of others.  This allows life to be a lot calmer, more mellow.  The really big single breakthrough was when I understood my fear of fear, and accepted that there will be times when I will be afraid or outright terrified.  Now I can wait, calmly, for the anvil to fall on me.  When it does I will perform my best Wiley Coyote impression and try to bounce back.  As I have stated many times, the mindfulness meditation has helped enormously by giving me many of the tools I need to watch my own craziness in action, and to devise strategies to keep it down to a dull roar.   Life is good.  I would like everyone to have this experience.

One person who is almost certainly not having a good time right now is Adrienne, whose blog I have just added to the blogroll.  She left a comment on my previous posting describing her ongoing two year  fight against  stage IV melanoma.  Hers seems to be much more aggressive than mine, and less amenable to the treatments they have tried.  I encourage you to read her blog, watch her video updates, and to send any  positive vibes you can generate in her direction.

My every-few-week injection routine continues, although there have been rather more lumps popping up in recent months.  A punch-biopsy of a suspicious lump on my right breastbone is still awaiting the pathologist’s verdict, which is mildly alarming; two years ago it would have been petrifying.  I am scheduled for another CT scan, and there is talk of starting me on a systemic treatment using yervoy (aka ipilimumab).  I was a little nervous when this was first mooted but I now feel almost excited to try something new.  About 25% of recipients have a “durable response”, which basically means that they are cured.  Wouldn’t that be nice?  One way or another it looks as though I have a good shot at the next big birthday.  I’m looking forward to it.

 News Roundup

It may be laid back where I am, but the rest of the world seems to be churning along fast and furious.  Without much commentary, here are the main points of the news.

Skin Stuff

Other Cancer Stuff

Head Stuff

TTFN.

Posted by: cg00n | February 6, 2014

Tomorrow Never Knows

Greetings all!  Happy 2014!  Gung Hay Fat Choi!  Etc. etc..

As I’ve commented before, my state of being index is inversely proportional to the frequency of updates on this blog.  This is also true for my own, hand-written journal which last saw an update in November.  So, you see, meta-data analysis can, in fact, tell you more than you might think.   Whether or not the various nefarious agents out there on the internet have managed to piece together all my alter egos I’m not sure.  Why would they want to?  Perhaps because they can.  For now I have no particular reason to think my identity has been compromised, so I continue to sleep well.  The melatonin helps, too.

One of my recently created internet identities is as a participant in online support groups for anxiety, depression, and skin cancer.  Right now I’m in a pretty good state to provide some support to others, and by doing so I bank up some credit for when I don’t feel so strong.  This seems to be working out pretty well, although there are very few people active in the skin cancer group.  Lots of people with various anxiety & depression disorders, though.  I get a warm and fuzzy feeling every time one of them says “thank you” for one of my postings.  Of course, for all I know I’m offering advice and consolation to an army of bots, or to a whole bunch of people who are just having me on:  the whole thing is entirely anonymous.  However, I choose to believe that at least some of them are real people with real problems.  BTW, if anyone figures out my disguise there please don’t blow my cover!  I’d like to keep all the pieces of my online existence separate.

Reading the postings on the support groups site brings back memories of the bad times, not so very long ago.  By now I can think about them without anxiety, but when someone writes “I can’t do this anymore” it still produces a momentary cold, sinking feeling in my gut.  People are not very good at handling uncertainty, especially when the signs are inauspicious.  I like to think I’ve got a bit better at that.  The real test will come when the bottom drops out of my world again, which it surely will someday.  For this reason alone I keep up my meditation practice, and although I doubt if I will ever become a buddha I feel as though I am taking sensible, proactive steps to improve my long-term prospects.

Two pieces of news inspired today’s James Bond / Beatles -based posting title.  The first was a personal experience just before Christmas.  One of the things I do with my copious free time is to help seniors with their computer problems.  A while back, one of the participants was a comparatively young man, probably in his late 40s.  He had had a hard time of life, suffering from alcohol abuse, working as a shrimp fisherman, and eventually losing a certain amount of cognitive function to a work-related accident.  More recently his house had burned down and his wife and daughter had left him to take care of his mother who is dying of cancer.  He was soft-spoken and very accepting of his fate, battling through his short-term memory problems to try to stay in email contact with his extended family in Iceland.  We managed to get some of his computer-related problems under control, but in late December I hadn’t seen him for some time.  I made a point of dropping by his mother’s house to deliver a Christmas card with a note suggesting we get together again in the new year.  When I asked if he was home, his mother said, “He’s dead.”  Apparently he had a heart attack in his sleep sometime in November.  I was completely dumbfounded.  Tomorrow never knows, indeed.

The second piece of news came courtesy of the BBC, and describes almost exactly the opposite situation.  This young lad was diagnosed with several forms of cancer.  During treatment he acquired other infections and his doctors despaired.  They predicted that he would die within days.  He didn’t.  In fact, he fought of his infections and now seems to be responding well to his cancer treatments.  My brief synopsis really does not do justice to this story:  you should watch the video.  This is a wonderful example of survival snatched from the jaws of death.  It is good to be reminded that uncertainty can have an up-side.  Tomorrow never knows….

In terms of my own health, lump-on-footmy biggest complaint right now is the lump in a very inconvenient place on top of my foot.  It is right on top of that very prominent bone, ideally placed to be rubbed up the wrong way by my shoes.  What is truly surprising about this is that it is the only example (so far!) of a melanoma tumour farther down my leg from the primary site.  It took me a while to realise what it was.  Fortunately it seems to be responding well to the IL-2 injections.  As you can see in the (TMI) picture, it shows signs of inflammation and there is a scab on top.  These symptoms result from my immune system killing off the cancer cells, leaving me with what amounts to a non-healing wound.  Eventually the lump will shrink to nothing and the scab will drop off, leaving just a small scar.  In the meantime, I’m looking forward to weather that will allow me to wear sandals, which will avoid rubbing on the damn thing.  I also had a couple more lumps removed from my calf (you really don’t want to see those pictures) so I’ll have to get some more stitches out next week.  Life goes on and winter can’t last forever.

News Roundup

Another bulging bag of bumph.  I’m just going to dump it on the floor here and let you sort through it.  Thanks, as usual, to Dr. DL and Mr. JP of Calgary, and others for contributing pointers.

Melanoma Stuff

News about Cancer in General

Thoughts and Other Mind Fillers

And this just in:

A cure for basically everything (video).  Dr. Mercola, Dr. Burzinsky et. al. please take note:  you have a competitor.

’nuff said.  BFN.

Posted by: cg00n | November 11, 2013

The Summer is Not Enough

Three months later.  Unbelievable, except that the skies now produce cloud, cold, and damp rather than sunshine, warmth, and dessication.  I hope you have all had a great summer.   What little I can remember of my own was very pleasant.  I did quite a lot of messing about in the boat, and we managed a short family vacation to Cape Breton which was fun for all of us.  P was away in Italy for 10 days, 4 of which I spent in a state of radical seclusion at a Buddhist retreat centre.  Ms. Z.J of Calgary spent a week here recently giving us the excuse to ditch the routine and play tourist.  A few of you have called or emailed generally with favourable life reports which we are always glad to receive.

The rune is gradually fading (common with magical markings, so I understand) leaving me with four or five lumps by way of an ongoing situation.  My doctors all seems amazed at my continuing good health which is a source of some concern to me.  I mean, if they’re happy, I’m happy but it would be comforting to feel that my current good health owes more to their understanding and expertise than it does to luck and divine intervention.  Anyway, the pathology report regarding  the lump removed during the marking of the rune confirms that it was (as expected) melanoma and that we did not manage to remove all of it.  So, I expect to continue the IL-2 injections until some other miracle cure is found, or the issue becomes moot for some reason.  Dr. H described my condition as “chronic”  which doesn’t sound so good until you contrast it with, for example, “terminal”.  I now go for shots once a month.  We use one (small) syringe of drug each time, half what was required a year ago.  As a result I feel less groggy and bounce back more quickly after each treatment.

The only tiny fly in the ointment is an unanticipated punch biopsy taken by Dr. L (the dermatologist) a few days ago.  I have a fairly innocuous lump on my belly which Drs. H and M have more or less dismissed.  It isn’t growing, but neither has it shrunk since I noticed it a couple of months back.  Dr. L thought we ought to check it out so I have a single stitch holding together a tiny incision near my rib cage.  It was the only thing he could find to criticize so … better safe than sorry. The results should be in by the time I next get my IL-2 shots.

Speaking of groggy, my experiments with melatonin reveal that a single half-3mg pill gets me a pretty good night’s sleep and a clear head the following morning.  Yes, I said morning!  For the first time I can remember, getting out of bed  is verging on pleasurable.  Doubtless all that psycho-work I’ve done contributes to this happy state of mind, as does the absence of monthly surgery.   Once my back recovers from the abuse it took getting the boat packed up for winter I may try skipping for joy – just to see what falls off.

And speaking of exercise, we have taken the completely unprecedented step of acquiring an exercise bicycle.  It must have been quite high-end at one stage but by the time we got it (for $15 in a garage sale) it was fairly beat-up.  An energetic day (requiring no further exercise) of cleaning, rewiring, and gluing together the display/meter thingy has rendered it once more suitable for use.  I have, in fact, used it once or twice and expect to do more during the winter.  Perhaps you, dear readers, would be good enough to remind me of that commitment.

News Roundup

I may start cutting back on this section.  A three month backlog is no joke, and the weight of even the URLs involved is enough to kink up my back again.  Oh well, let’s dive in:

Melanoma Stuff

More general cancer news

More general health stuff

In summary:  progress on many fronts, and hope for the future.  I’m off to do some skipping.  Be well, peeps.

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