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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Posted by: cg00n | August 16, 2013

Runemaker

Everything seems to be going reasonably well.  The stitches came out about a week ago and, although there are a couple of “soft” spots and one little section that isn’t holding together too well, the situation is improving. leg-large-lump-gone This pic was snapped just before removal of the stitches (I count 50), and there were about that many holding together the deeper layers of tissue so the rune is starting to fade into the background, as magic symbols tend to do.

The surgery itself was a little more involved than usual.  Dr. M. himself did the honours with a couple of assistants and a nurse.  As usual they used local anaesthetic injected at various places along the proposed incision lines.  It is pretty effective but if they are cutting close to a nerve there is a kind of deep, achy feeling; it is as if my body knows it is suffering damage even if it can’t feel the pain.  In spite of all my meditation practice it is still difficult to remain completely undisturbed and a few minutes in I started to feel light-headed and nauseous with profuse perspiration, a bit like having really low blood pressure.  No one accused me of being a wimp, however.  The nurse helped to lower my head and got me some cold cloths.  She said that very few people had actually succeeded in throwing up on her, a tribute to her fleetness of foot I suspect.  After a few more minutes of revolting nausea and wooziness I began to feel better again and we made it to the end of the surgery without further incident.

With my leg swathed in layers of gauze and compression bandages I was placed in a wheelchair and P helped decant me into the car.  Once home I hopped (literally) from the car to the elevator and thence to bed where I remained more or less continuously for the next 48 hours or so with my leg propped up on a pile of pillows to help it drain.  After that, with the aid of a walking stick and a shower chair (not simultaneously, I hasten to add) I was able to resume a semi-normal existence.  It remained painful to put weight on the leg for another few days, but in general I required little by way of analgesics.  Since then it has been slow but mostly steady progress.

Today (as I write) is a drab, dreary, rain-soaked day after a week or so of quite fine weather.  It is tempting to feel bummed out because I still can’t do much leg exercise:  walking, stairs, boating, ballet, tight-rope walking  etc..  Feeling sorry for myself is something I’ve had lots of practice at.  The summer is waning (as well as raining) and my boat sits neglected at the dock.  My bike is gathering dust in the garage and even I feel motivated to get out and get some exercise.  We have A home for three weeks and I would love to be able to go places with her rather than sitting around like the proverbial bump on a log. Thursday will see another round of IL-2 injections which will render me a smaller bump on a bigger log.  But instead of allowing the heaviness of disgruntlement settle upon me I am catching up on my back reading, listening to dharma talks, learning Python (a programming language) and going through most days feeling quietly contented with life.  It is so much easier now to focus on the positive side of life that it used to be, and a lot more fun.

I have been experimenting with sleep recently.  This one of my other chronic difficulties, frequently exacerbated by my irritable bowel.  It is difficult for me to sleep through even mild disturbances:  conditions have to be almost perfect for me to get a good night.  For the last few years I have been taking a small dose (one-quarter of a .5mg tablet) of clonazepam before bed.  However, it seems to be losing its effectiveness and I don’t want to become habituated to it in case I really need it to do its job as an anti-anxiety medication.  My current substitute is melatonin, a choice I ran by Dr. C who seems to think it is a worthy experiment.  I’m popping two 3mg pills at bedtime which seem to help me fall asleep and to sleep more soundly, although I wake up a bit foggy.  For some reason I also have a tendency to wake for about an hour after 2-3 hours of sleep.  I don’t know what that’s all about but I try to use the time to meditate which is, at least, restful.

Speaking of meditation (that almost never happens here) I came across some articles on adverse effects.  This is a total surprise to me, although I suppose that anything that affects your mind could cause problems.  This Livestrong article briefly exposes some of the potential problems and Wikipedia also deals with this topic.  What it comes down to is that having an experienced teacher is a good idea.  Failing that, I’d say it is a good idea to take a course or at least find some other meditators (an online forum is better than nothing) with whom you can compare notes and ask questions.  It has done wonders for me but, as always, YMMV.

News Roundup

A refreshingly short list this time around.  My thanks, as always, to those of you who have pointed out items of interest.

And that’s all for now.  Hope you’re all having a wonderful summer!

Posted by: cg00n | July 12, 2013

Never Say Never Again

I wonder if that should be parsed: Never say “never” again, or: Never say “never again”?  In my case the latter interpretation provides a friendly reminder that my first surgery for over a year is coming up on July 23rd.There is a sizable lump leg-yin-yangin an area that has seen a lot of activity over the last few years.  It doesn’t seem to be growing, which is good.  We have been giving it IL-2 injections but it doesn’t seem to be shrinking either, which is not so good.  It may simply be a build-up of scar tissue, but the general consensus is that we should cut first and ask questions later.  Yesterday Dr. M spent some time drawing occult symbols on my leg, perhaps to cast out any malevolent influences before the surgery.  There was some talk of doing it while I waited (just bite down on this leather strap while we…).  However, the doctors decided that they needed a better-equipped torture chamber with more sharp-shiny-tool-equipped assistants.  This is a slightly bigger job than usual so they’re going to do a yin-yang flap surgery which is likely to heal faster than my normal evil-eye variety.  It may also require a small skin graft.  Ah well:  been there, done that, got the T-shirt stained.

An appointment with Dr. D revealed that there is little else to worry about.  A recent CT scan reveals nothing sinister north of my right thigh, and a slightly less recent prostate exam reveals that prostate exams are still uncomfortable but (in my case, anyway) innocuous.  There are good reasons for me to be optimistic.  The hot topic in cancer research at present seems to be the various mechanisms by which one’s immune system can be coaxed into a more effective response.  Anti-PD-1 drugs are showing a lot of promise and Yervoy/ipilimumab has been proving quite effective for lots of people.  I foresee a whole different death awaiting me, when the time comes.So far the summer seems to be going really well.  All the major weather events, train derailments, airline crashes, regime changes, intelligence leaks, senate scandals, and questionable beatifications have been a long way away.  Now we’re looking forward to September which is peak hurricane month and may provide a little more entertainment.  In the meantime, perhaps some of you would like to visit?  We got the leak in the boat fixed and we can take you tubing.

That is all I have to reveal about my life right now.  Check WikiLeaks for more information, doubtless coming soon from someone at the NSA.

Have a great summer!

News Roundup

(come hell or high water)

Well, the level of dammed-up news articles has reached a barely manageable mass.  I’m bailing frantically.  Meanwhile, open wide and take a sip from this fire hose.

Save Our Skins

Drugs, Therapies, & Screening

Anti- PD-1 drugs seem to be really hot right now:

There are many other really cool potential treatments:

And a couple of improved screening developments:

Do you mind?

And would you believe it?

And finally, The Cancer Villages of Turkey:  it turns out much of the local geology is erionite which is a form of asbestos.  Needless to say, mesothelioma is a rather common problem.

BFN.

Posted by: cg00n | April 27, 2013

License to Live

About a week ago, without any fuss whatever, a relatively noteworthy event occurred.  It was the fifth anniversary of my melanoma diagnosis.  At the time the prognosis did not look all that good and, certainly, looking back over the five years reveals some rough times.  Still, I am alive and bi-pedal with what appear to be good prospects going forward.  My sincere thanks go to all my doctors and caregivers whose ongoing efforts have kept me alive and healthy, and also to all of you, dear readers, who have offered so much encouragement along the way.  Doubtless you will be relieved to know that I am running low on James Bond puns and may be forced to revert to meaningful titles for my posts in the near future.

Somehow I seem to have skipped over March and most of April without finding anything of interest to say here.  Three weeks of that was spent on vacation.  It has been a long time since I have been able to get away for more than about a week or 10 days.  Medical visits, post-surgery care, and family commitments have all played their part, but finally this year the omens were auspicious.  As a result, P and I played tourist in London (England), caught up with a number of my old friends and family, had some memorable meals, drank some memorable beer,and got snowed and rained upon wherever we went.  It was all good, if a little soggy.

Other than the vacation my life has been fairly routine.  The Interleukin-2 injections continue to happen on a more-or-less bi-weekly basis and, on the whole, seem to be keeping the melanoma confined to a few sites on my leg.  The only real downside to the treatment for me is that it leaves me feeling very tired for a few days afterwards.  For some reason this is particularly true for my most recent dose which took place on Tuesday.  Today is Saturday and I’m still feeling seriously depleted.  Doubtless it will pass.  Three new lumps showed up during our trip, but that is not entirely unexpected.  There was a 6 week hiatus in the treatments because one that should have taken place just before we left was cancelled due to a drug supply problem.  Regrettably, the rather informal arrangement between Dr. G and the drug company does result in the occasional lapse of this kind.  He is putting together a proposal for a proper clinical trial or study (or whatever) but it will be a while before that comes to pass.  It is interesting to note that no one in the US appears to be using IL-2.  There are trials of similar treatments but, at least according to Dr. G, few of them seem to be as effective.  Once again, I feel lucky to be living near to one of the very few places on earth where I can get this kind of care.

While we’re sort of on the subject of cancer care in the US, and on the heels of Cameron’s story, I received another interesting email on the subject of mesothelioma:

My name is Susan Vento. My husband Bruce was a member of the US House of Representatives—until October 10th, 2000, when everything changed. Bruce died of pleural mesothelioma—a rare disease caused by asbestos exposure that kills 90-95% of those who have it. Not many people know about this terrible disease, which lead me to reach out to you; I noticed that you have an influential cancer site full of great information. I am hoping you will help me spread awareness about asbestos cancers and help to protect the rights of those who have been affected by mesothelioma and other cancers.

‘Influential’, eh?  Keep those compliments coming!  It sounds as though the US government is mulling a Furthering Asbestos Claim Transparency (FACT) act which many feel will further victimize the victims of asbestos exposure.  For those of you who wish to know more about this, check out Ms. Vento’s piece on the Cancer Victims Rights website.  I am glad to say that Canada has finally given up on asbestos production:  it should have happened much sooner as Aasif Mandvi reported on The Daily Show two years ago.  We’ve known this was nasty stuff for a long time.

What else can I tell you?  I’ll be getting a CT scan in early June.  Although I have no reason to suppose it will reveal anything unexpected, it is still a comfort to check things out once in a while.  I’ll be seeing Dr. M fairly soon too.  I miss him and his merry crew, but not so much the cutting and stitching.  In the meantime, excuse me while I go and launch a boat.

News Roundup

Lots of melanoma news in this edition:

And elsewhere:

Until next time, I remain your influential servant….

 

Posted by: cg00n | February 28, 2013

From Cameron, With Thanks

This month I’ll start with something unusual:  someone else’s  story.  I find offers of money and  work hard to turn down – and those are just the tip of the iceberg, believe me.  So when this guy Cameron asked if he could borrow my soapbox to say his piece I didn’t take much persuading.  Without further ado, here is what he has to say.

Surviving as a Caregiver

Most people never have to think about how strong they might have to be in the face of adversity. My day of reckoning came on November 21, 2005, when my beloved wife Heather was diagnosed with malignant pleural  mesothelioma, a rare and extremely deadly form of cancer.

We sat there stunned. We had just had our daughter Lily three months before, and we had been looking forward to celebrating her first Christmas in a few more weeks. We were unprepared for this new challenge and glancing at my wife’s shocked and terrified face, I knew I had to take charge. I told the doctor to get us to Boston, where Heather could receive treatment under the care of a renowned and experienced specialist in the treatment of mesothelioma, and I took the first step in becoming my wife’s caregiver.

Our lives dissolved in to chaos over the next few months. We had worked full time before, but now Heather had to stop and I had to scale back my hours in order to care for her. This put enormous strain on our financial situation, which only added to the stress we were going through.  I wanted my old life back, and on several occasions, I broke down crying under the strain and anxiety of our new lives. However, I always kept these moments of weakness to myself and never let Heather see me afraid.  I knew she needed me to be strong, and I always tried to remain positive in her presence.



I hope you never end up in my situation, but if you do, the best thing I can tell you is to accept the love and help that is offered. You may feel that you have to do it all on your own, but this is never the case. Take a moment to think about what your family and friends want to do to help you, and let them. This is how you are going to get through this.  I learned the hard way that there is no room for pride in a fight with cancer.  Ask for help, and accept it gratefully when it comes.  At the very least, it will remind you that you are not alone in the fight.



There will be a time when you want to give up. Don’t. There is an end to this, and there is peace as well. After all of the stress and all of the chaos, you will get through it. You just have to remain sane as you do so. I will not say that it is easy, but I will say that you can get through this.



It was years before things even got back to normal, but even during that time things kept moving forward. Throughout Heather’s  mesothelioma treatment we continued to raise our daughter Lily together, and today Heather is cancer free.

We have succeeded beyond my wildest dreams, and today I have found that there are so many things that I love and enjoy. If you are caregiver, my heart goes out to you.  To be a caregiver takes a strong, unbreakable will, but the rewards can be wonderful. All I can say is that you should never, ever give up, and always keep fighting for the ones you love.

Thank you for that inspiring piece, Cameron, and I’m sure we all wish you and your family smooth sailing in the future.

If anyone else wants to make use of my world-famous blog I’d be happy to entertain further offers of material (or money) and to exercise absolute, bloody-minded editorial authority over  whatever appears here.

News Roundup

Also thanks to Cameron’s timely intervention the news backlog is not too bad this time around.

In the Melanoma bin we have:

Next to it, in the General Cancer bin there is:

There are a number of interesting items in the Mental Health bin:

Finally, in the Everything Else bin we have:

That’s all for now.  As Stephen Colbert would say, I’ll see you in health!

Posted by: cg00n | February 1, 2013

Crapola Royale

Holy carpe diem!  Is it February already?  Subjective time strikes again.  When I’m feeling lousy the hours just drag by.  By contrast, the last two months have just flown by, so I must be feeling well.  Aren’t you happy for me?  Anyone still out there?  I promise I’ll try to have something more dramatic to write about – sometime.  For now, the IL2 injections continue every few weeks and life goes on around them.  A CT scan done in December showed nothing unusual, which made a great Christmas present.  My psychiatrist thinks I’m doing really well:  I haven’t had an anxiety attack for many months and my clonazepam bottle sometimes remains untouched for more than a week.  When I do pop a half pill it is usually as a sleep aid.

I have been tinkering with my diet a little bit because of some ongoing minor gastric distress.  IBS is another one of those miserable, chronic conditions that can really drag down your state of mind.  When you have a constant gut ache, your diet is significantly restricted, you don’t sleep well, and getting to sleep is a delicate art taking a couple of hours each night, life can look a bit colourless.  Most of the time I can avoid 2 or 3 of those four, but then something shifts a little and I notice that I haven’t been feeling so good for the last couple of weeks.  What to do?  There are so many variables:  diet (or ingredient changes in processed foods), drug changes, stress, exercise (or lack of), aging, posture, the time of year, global warming….  In this most recent round in the ring the major culprits seem to be:

  • prozac irritating my stomach
  • a change in the Koala Crisp (breakfast cereal) recipe

I was taking the prozac just before I went to bed because it makes me a bit sleepy.  Until recently this seems to have been fine but now I’m noticing a tendency to get urpy, so now I take the prozac with dinner which seems to be an improvement.  We’re not sure about the Koala Crisp (which is a Really Good chocolate-covered crispy rice thing) but cutting that out did seem to make a difference.  When we visited Calgary late last year I didn’t eat any for a couple of weeks and my gut was very content, in spite of all the restaurant food.  The trouble started after we got back.  Perhaps I should have the water tested, too.

Speaking of water, Mr. DH of BC very kindly sent me a copy of The Case Against Fluoride which i have been reading with great interest.  When I was a young lad the conventional wisdom was that getting a little extra fluoride in your diet helped promote the growth of stronger tooth enamel.  Fluoridating the water seemed like a good idea, from a public health perspective.  I was fed “F-tabs”, little salty pills, for years and, sure enough, my teeth are made of pretty strong stuff.  I used to strip wire with them (NOTE: don’t try this!  It is a really bad idea.)  However, it is now well-understood in the scientific community that topical application (e.g. using toothpaste) is actually more effective.  There are also a slew of undesirable effects from getting too much fluoride.  So, why are we still putting fluoride in the water supply?  Conspiracy theorists should put on their tin-foil hats before reading this book, which appears to be very well researched by authors with solid credentials.  To be clear, they do not advocate against fluoride per se; they simply argue that fluoridation (i.e. adding fluoride compounds to drinking water) is a bad idea and we should stop doing it.  The prevalence of alternatives makes it unnecessary and undesirable.  IMHO they make a good case.

Not much else to tell you at present.  Cancer continues to rear its ugly head but all the people I know who are living with it seem to be doing well for now.  That’s really all one can ever ask.

News Roundup

As is too often the case these days, the backlog has reached teetering pile status so I’m just going to list most of this stuff without comment.

Our coverage tonight starts with melanoma-specific news:

  1. Research Breakthrough Could Halt Melanoma Metastasis, Study Suggests – see also item 4
  2. New Screening Approach Identified Potential Drug Combinations for Difficult-To-Treat Forms of Melanoma
  3. Better Approach to Treating Deadly Melanoma Identified – improving MEK inhibitor drugs
  4. Serendipity Points to New Potential Target and Therapy for Melanoma – melanoma lacks a growth control chemical
  5. How Deadly Skin Cancer Spreads Into Other Parts of the Body – a lot to do with angiogenesis
  6. Drug-Resistant Melanoma Tumors Shrink When Therapy Is Interrupted – drug holidays may be a good idea
  7. ‘Drug holidays’ beat cancer drug resistance in mice – as I was saying…
  8. Concerns Raised Over the Effectiveness of a Costly and Invasive Procedure for Melanoma – sentinel lymph node biopsy
  9. Melanoma-diagnosis smartphone apps ‘have potential to harm’ – too many false negatives
  10. New Mutations Discovered Driving Malignant Melanoma – may cause overproduction of telomerase
  11. Gene Mutation Immortalizes Malignant Melanoma – maybe related to previous item
  12. Children and Melanoma – too few children available for clinical drug trials
  13. Silibinin, Found in Milk Thistle, Protects Against UV-Induced Skin Cancer

Moving to general cancer issues:

  1. Children ‘need more teaching on cancer causes’
  2. Cancer cells executed by magnet – … and metal nanoparticles
  3. Pioneering cancer treatment’s struggle for survival – immunotherapy research hit by wobbly economy
  4. New Technique Could Make Cell-Based Immune Therapies for Cancer Safer and More Effective – T-cells that look for two antigens
  5. Trojan-horse therapy ‘completely eliminates’ cancer in mice – white blood cells deliver virus payload to tumours
  6. 3 articles about the same research involving growing targeted T-cells in the lab:
  7. Positive spin and bias in breast cancer trials uncovered – more on suppression of drug trial results
  8. Cancer Networks: A general theoretical and computational framework for understanding cancer; I think this is the same stuff reported in Physics not biology may be key to beating cancer

And, in other news:

  1. How happiness changes with age
  2. Meditation for pain relief gains respect from doctors
  3. Cannabis can make patients ‘less bothered by pain’
  4. Potential of Psilocybin to Alleviate Psychological and Spiritual Distress in Cancer Patients Is Revealed
  5. Overcoming Anxiety: Moving from Fear to Presence
  6. New drug lifts hard-to-treat depression in hours
  7. Gut instincts: The secrets of your second brain – your gut thinks it is quite complicated
  8. Wilko Johnson: ‘Terminal cancer has made me feel alive’ – former Dr. Feelgood guitarist

By the time you’ve read and digested all that I may have another posting ready.  I’ll try.  Good health, all of you!

Posted by: cg00n | November 14, 2012

My Fall

Summer has blown out of here leaving us with a beautiful fall.  Even yesterday, in mid-November, it was 18C degrees and sunny.  There are still some mosquitoes around but I’ll take that over winter in the prairies anytime.

The long hiatus in writing here is entirely due to no news being good news, so I’ve been caught up in the busy-ness of living my life.  We were very pleased to be able to see some of you during our recent trip to Calgary & Banff.  All the free meals were the icing on the cake:  most enjoyable.  As always, we will be delighted whenever you show up on our doorstep.  Ideally you should give us a couple of hours notice.

My IL-2 injections continue to happen at 2-3 week intervals but we seem to be running out of things to inject.  This is a rather pleasant problem to have.  Dr. G asked me if I felt OK about that.  I certainly do!  It is always possible that the melanoma has simply moved somewhere else but a) that could happen anyway, b) there is no evidence to suggest that it has and c) there is still that helicopter waiting to fall out of the sky on top of me.  At the beginning of this year I was quite worried about the apparent progression of the disease but this new treatment regime is so effective that I’m half expecting to live to be 100.  Dr. G continues to be very optimistic about progress in cancer understanding and treatment in general and I find his attitude somewhat infectious.

Dr. M and his merry team looked me over a few days back and were suitably impressed, although I suspect they are actively searching for another victim to cut up:  they obviously need to stay in practice :-^  As a side effect we now have a somewhat embarrassing surplus of Mepilex dressings, so if anyone needs some drop me a line.  Also saw Dr. D a couple of weeks ago and we have decided that, since there is nothing worth cutting out, any attempt to get involved in Dr. Ohashi’s T-cell trial taking place in Toronto is more or less doomed to failure, at least for now.  When and if things change I’ll look into it again.  This sort of adoptive T-cell therapy is one of New Scientist’s picks for The Five Most Promising New Cancer Treatments – see the News Roundup, below, for more info.  Tomorrow I will go for my annual checkup with Dr. L which I fully expect to be unremarkable.  If I’m wrong you’ll hear about it.

All of this good news has made me lazy with respect to mindfulness.  Not so long ago I was exercising mindfulness most of the time but all that busy-ness of living I mentioned has been distracting.  Still, I have read a couple more books on the mind and how it can help the body to heal and I’ve been keeping a gratitude journal, something I mentioned back in May.  The objective is to force myself to really pay attention to the things that make my life worthwhile.  For the first couple of months my entries were short and fairly generic:

  • All the comforts of my pleasant existence
  • Thoughtful friends
  • Having no schedule; lack of hurricanes

Recently I realized that this is not good enough.  What I need to do is to record something quite specific and in enough detail that I can almost recreate the moment in my mind, something like:

  • The smell of wood fires burning on a crisp, colourful autumn day

That conjures up a vivid feeling of being there again. A recent New Scientist article (pointed out to me by Ms. Z.J of Calgary) on over-general memory underscores the importance of doing this.  It appears that those who suffer from depression have greater difficulty bringing to mind specific events, even good ones.  The theory goes that an inability to think of happy times when you’re feeling miserable just makes you feel worse, leading to a downward mood spiral.  So, the new insight on my part is that I may be less inclined to depression if I can recreate the good feeling of some past event.

Speaking of feelings, I have also realized that tuning into my senses and emotions during meditation is easier if I avoid sub-vocal cues altogether.  The kind of mindfulness meditation I do can use a few words to help maintain concentration.  For example, when paying attention to the breath one can keep a count or one can think (very lightly) “in … out …” as one breathes.  This is certainly helpful up to a point but I found I was getting too caught up in the words, using them more like a mantra as one would in transcendental meditation.   Recently I have been counting for the first 10 minutes or so just to get “in the groove”, after which I try to lose all the words and just sense stuff:  colours, sounds aches & pains, clothing against skin, breeze across face, scents in the air, whatever is happening, all the while being aware of any thoughts or ideas that cross my mind and not getting carried away by them.  It is a very delicate process, one that I could not have managed two or three years ago.  There is a feather-light quality to it that I have difficulty describing, but I highly recommend it!

News Roundup

Do you ever find yourself wishing the march of progress would slow down just enough for you to catch your breath?  Right now I’m having one of those moments.  The news in-tray is overflowing in all directions, so with shovel in hand I bring you the jumbo update.  Please sit down:  this will take a while.

In general news,

Progress on drugs and treatments continues apace:

Speaking of drug trials and such,

  • Ben Goldacre’s new book, Bad Pharma, sounds like a must-read.  His blog has a posting on why it is vitally important that all drug trial results are reported and why the current reporting system falls drastically short.  He also gave a TED talk.
  • The efficacy of Tamiflu is being questioned.  Apparently Roche has not shared all the trial data. I was just reading something about that sort of thing….

In the whacky whirl of mental health,

Around the world,

Thanks, as always, to those of you who send me snippets to include in this section.  With any luck they will benefit the rest of the audience too.

Until next time, may you be happy, safe, healthy, and at peace.

Posted by: cg00n | August 28, 2012

On Her Mother’s Sickbed Service

P is having a hectic summer.  About a year ago her mum, living with P‘s brother’s family in Toronto, was diagnosed with lung cancer which had spread.  Up to that time she was living independently (more or less) in her own condo, not bad for an 80-something-year-old with a history of high blood pressure and minor strokes.  Since then she has had several rounds of chemotherapy which she has tolerated quite well and was declining fairly gracefully until about a month ago.  Inevitably this coincided with P‘s brother & family taking off on vacation to the Far East.  With her mum in hospital in a semi-stupor P had little choice but to drop everything and spend 10 days in the not-so-far east.  Brother & family got back just over a week ago at which point P came home.  A few days later her mum slipped into a coma from which she did not emerge and died in the middle of  last week.

We’re noticing something of a pattern here:  my mother and father, various departed friends and relatives of friends have followed it quite reliably.   They get sick or extremely aged (or both) and appear to be on a glide path that will intersect the earth at some time T from now.  At about .8T something critical fails and there is a sudden crash.  Even when one is expecting the end fairly soon this can be something of a shock.  At least it is not as devastating as losing a friend to a falling helicopter.  There is time to prepare, tidy up loose ends, and meditate on the impermanence of all things.  P and the rest of her family are doing fine and life is getting back to normal.

I, too, am doing fine.  The immune system boost may account for the rapid departure of a recent cold:  I don’t think that rhinovirus knew what hit it when it tried to invade.  My IL-2 injections were slightly delayed due to some sort of problem obtaining the drug from the outfit in Quebec which makes it.  That really brought it home to me how this would affect those people who rely heavily on a consistent supply.   In my case, not knowing when the next treatment would happen provoked just a twinge of anxiety.  For some people it could require desperate measures.  Spare a thought for them when you hear a news item about drug shortages:  there have been a couple in the last year.

So in the absence of anything much to worry about I have been thinking, usually a precursor to a freshly-minted uncertainty.  In this case, thanks to an email from Mr. D.H of B.C (or possibly vice-versa), I’ve been wondering how any of us know anything for a fact.  It seems to me that everything ultimately comes down to faith or trust.

This line of thought started with an interview conducted by Dr. Joseph Mercola. He is a somewhat controversial figure, prone to promoting what the mainstream medical establishment regard as unsupportable theories but a hero to many who feel that (big-S) Science is elitist and exclusionary.  His interviewee is Stephanie Senneff, Ph.D who has fairly credible Scientific bona fides and some radical views on diet and the role of sulphur.  For example, contrary to most commentators, she believes that eggs (especially the yolks) are really Good Stuff and we should, in general, be consuming a lot more in order to avoid a cholesterol deficiency.  (N.B: watch the interview yourself and tell me if I am misrepresenting this.)

Mr. D.H himself has been quite active in the drinking water fluoridation debate, being very clear that “Fluoride is terrible stuff.”  When I was a young lad my dentist gave me F-tabs (fluoride tablets) to harden my tooth enamel which he said was leaving me vulnerable to cavities.  Later in life my various dentists commented on how tough my teeth were so maybe the F had the desired effect.  Maybe it also made me a neurotic wreck.  Suppose I wanted to find out “the truth” about fluoride or dietary cholesterol, intelligent design or any other theory.  How would I go about it?

First, I suppose, I need to understand how to evaluate “truth”.   For me this is a matter of finding the scientific theory that best fits all the known observations and which can be used to make predictions regarding the results of observations that have yet to be made.  Now, what is an “observation”?  Things get messy at this point.  There are the obvious well-documented “we have the pictures to prove it” kind, but how can one be sure that the pictures are undoctored, the evidence untainted, the observers unbiased?  There are the statistical observations, but these always come with margins of uncertainty and rely on the aforementioned unbiased, untainted, undoctored raw observations.  There are the experiential observations where a huge number of individuals make strikingly similar reports of something that happened to them, but an equally huge number have an entirely different experience under the same conditions:  is there such a thing as an objective experience anyway, or are they all subjective?  I don’t see myself, as a layman, being able to draw any scientific conclusions from this dog’s breakfast.  If I became an expert in the domain under consideration I might, perhaps, feel confident enough to take a stand, but only in that domain.

A non-expert (such as myself) must therefore rely on expert opinion to decide which theory is best.   OK, so which experts are trustworthy?   In whom should I put my faith?  Perhaps those with the most convincing credentials, but then I also have to trust those who awarded the credentials and whatever assessment process they used to do so.  I could go for a consensus opinion, but which consensus and why?

Perhaps there are some guidelines I can apply.  Observations that cannot be corroborated, results that cannot be reproduced are highly suspect.  Experts who have been exposed as cheats or frauds and data that are demonstrably unreliable are not trustworthy.  Direct personal experience may be considered fairly reliable assuming one can account for faulty perceptions, altered states of consciousness and so forth.  Proof by blatant assertion is insufficient:  I have to be convinced that there is a logical, supportable chain of reasoning underpinning the theory even if I am incapable of verifying every step for myself.  That helps to eliminate most of the obvious outliers but it still leaves a lot of undecided cases.

In the final analysis I just have to accept that there are undecided questions in my life which are probably undecidable, at least by me.  Should I eat more eggs?  Did the extra fluoride do more harm than good?  Does vitamin D help control cancer?  Is human activity primarily responsible for global warming?  Is Stephen Harper destroying Canada?  Was JFK assassinated by Lee Harvey Oswald?  Beats me.  My world view is founded on emptiness.  How about yours?  Send me your thoughts.

News Roundup

Tons of news this time around.  I really need to clear the queue more often.

Melanoma research news

Melanoma treatment news

Melanoma and tanning

Other cancer news

Meditation and mindfulness

To wrap it up, a Livestrong questionnaire about cancer survivor care which you may wish to fill out and an interesting opinion piece on coming to terms with universal health care.  By the time you’ve digested that lot I may have another posting ready.  But probably not.

Posted by: cg00n | July 9, 2012

The Man with the Golden Syringe

The big news since the last update is that I am now 3 weeks into my Interleukin-2 treatments.  They take place approximately every 2 weeks during a short clinic visit featuring Dr. G and his golden hypodermic syringe.  There is the usual frightening list of possible side effects but the only thing that is really noticeable in my case is that a few hours later I feel very tired with some general aches.  Hardly surprising since my immune system is in high-caffeine mode and looking for trouble.  For a few days after the lumps might itch a bit but (and this is the important bit) they do seem to be shrinking.  The process appears to be quite slow and there is still no guarantee that it will prolong my life but I’m 95% convinced that the treatment is working which is a great comfort.  I probably won’t need a lot more minor surgeries.

Having said that I may, in fact, take a trip to Toronto in order to have a lump or two cut out.  For some time I have been in touch with a Dr. Ohashi who will be starting a clinical trial of a melanoma treatment involving cultured T-cells.  Although I am not in need of any systemic treatment at this time we agreed that it would be helpful if I could provide some melanoma tumour material in advance.  It gives her team something to play with and may come back to benefit me if more drastic measures are needed.  Dr. D (my oncologist) has now contacted the people in Toronto and I believe there is a mechanism more or less in place to allow me to have them acquire said tumour material.  The timing of such a trip is, as yet, completely undetermined.  We’ll have more news as it becomes available.

What with one thing and another I haven’t actually asked any of my doctors for the results of the recent PET scan but no news is almost certainly good news, in this case.  I’m sure Dr. G (who ordered the scan) would have told me if there was anything wrong.

From a state of mind perspective I am doing very well.  My anxiety is currently down into the noise level and I’m getting on with my hectic retirement.  Part of this is, of course, the ongoing effort to keep my mind in a good state.  I meditate at least an hour a day (on average), read a lot of stuff on the web (e.g. Tiny Buddha, Raptitude), spend time discussing the practices with friends (thank you Beth, Scott, Richard, Anna, & David!), and I chat to my psychiatrist about once a month.  I am essentially trying to learn new habits of mind (living in the present, dwelling more on the positive than on the negative, etc.) and this is not something that comes easily to me.  If any of you have thoughts on how to do this more efficiently please let me know.

My next big push on the mental health front will probably involve digging into The Healing Journey.  A group of people centred around the Princess Margaret Hospital and the Ontario Cancer Institute in Toronto have developed a series of courses that appear to bring together much of the material I have found scattered all over the place.  The courses are offered by the PMH and also across the Canada at Wellspring Cancer Centres but all the material, workbooks etc. is available online.  There is an amazing amount of self-help material available now that I just could not find four years ago.  Always something new to try.  My thanks to Ms. M.W of Nova Scotia for introducing me to this program.

As a final salvo in my “you really should try this meditation stuff” campaign, here is a lovely little Tiny Buddha posting that you might find persuasive.  Namaste.

News Roundup

In skin cancer news we have:

There were a couple of interesting New Scientist articles recently:

  • Retune your Immune System talks about the many things that help you to fight off illness before resorting to drastic measures.
  • There is an experimental cancer drug (Chlorotoxin) made with radioactive scorpion venom.  Sounds like something out of  Spiderman.

In other news:

That’s it for today.  I hope you’re all having a wonderful summer.

Posted by: cg00n | June 3, 2012

You Only Die Once

There has been another death in my online family:  Doug Gosling died a few days back.  His blogs (Talking About Cancer and Dying Digitally) have been incredibly valuable to me.  Indeed, I would go so far as to say that I think of him as a role model.  Thanks to his writing I have a much better feeling for how cancer might play out, the sort of accommodations I might have to make, the kind of care I might need.  Many of the big, scary unknowns are now better known and and much smaller than they used to be thanks to people like Doug who are willing to share their experiences in such a visceral way.

Another inspirational figure is one I mentioned a couple of postings ago:  Dr. David Servan-Schreiber.  He wrote the book Anticancer and succeeded in living well with his own brain cancer for almost 20 years.  Last year he finally succumbed, a process he managed to document in his book Not the Last Goodbye.  Like Doug Gosling’s blogs, it is a very personal account of his thoughts, feelings, trials, and tribulations between the time of his last major relapse and his death.  It helps to demystify the whole process while also encouraging the rest of us to take positive steps to help ourselves, something I am slowly learning.  One anecdote from Anticancer that I forgot to mention in my previous posting underscores the vital role played by the immune system in fighting cancer.

At a hospital where Dr. Servan-Schreiber was a staff member, the recipient of a kidney transplant developed melanoma with no detectable primary tumour site.  All attempts to save the patient ultimately failed.  Some months later a second kidney transplant recipient also developed melanoma.  This was one almighty coincidence so the doctors did a little investigating.  They discovered that both kidneys were from a single donor who had been diagnosed with melanoma many years before but had been pronounced cured after apparently successful treatment.  She had been in good health for some time before being killed in a car accident.  In light of the two cases of melanoma it would appear that the donor’s immune system was keeping ahead of the cancer.  Of course, the transplant recipients were taking a ton of immuno-suppressant drugs which presumably allowed the melanoma to gain the upper hand.  The second patient survived after being given immune system boosters and rejecting the kidney.  Interesting, isn’t it?  The take-home lesson from all this, as far as I am concerned, is that it is possible to help oneself in a pragmatic, scientific way without resorting to magic or  quackery.  That’s important.

In the meantime, for me at least, life goes on.  Tomorrow I get PET scanned again, so today I have to avoid exerting myself – something I’m quite good at.  There is no reason to suspect that the cancer has spread but Dr. G  wants to be sure before we try the IL-2 injections.  Although I still have no firm date for the start of this treatment I have heard that the drug is now available so I am expecting an appointment RSN.  Dr. M and his assistants carved out the three lumps present at the time of my previous posting.  All were positive for melanoma (no big surprise but a little disappointing) and Dr. O will take the stitches out in a couple of days.  I looked into getting tissue samples sent to Dr. Ohashi but was unable to make suitable arrangements.  According to her:

Basically if there is no one on your end that can coordinate a TON of paperwork as well as logistics for how to handle the sample, then its hard to know how to proceed.

I’ll be seeing Dr. D later this week but the PET results won’t be in that quickly and I doubt if we’ll have a lot of new stuff to talk about so I may bring this up.  It may be simpler to go to Toronto for the next lumpectomy but I suspect that, too, is easier said than done.  Just to complete the rounds, as it were, I talked to Dr. C last week.  She seems pleased that my State Of Mind is improving and feels safe enough to take a summer vacation before we meet again.  That’s a good sign, I think.

As you can tell I’m getting very good value for my tax dollars out of the Canadian health care system.  The mere thought of having to cope with all this in the U.S.A is almost enough to bring on an anxiety attack resulting in a complete immune system collapse and death within weeks.  If you live in a country with a good social safety net, be grateful.  Be VERY grateful.  At times like this you will find it is worth every penny.

News Roundup

First, please spare a thought for my friend Mr. R.J of Calgary and his brother who was diagnosed recently with multiple myeloma.  May there be lots of life and happiness yet for both of them.

Sifting the crud of the internet reveals:

I’ll leave you with this final observation on progress in medical science.  Until next time….

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