Posted by: cg00n | January 29, 2012

Quantum of Solace

I’ve been a bit down in the dumps this last week or so, as usual for no apparent reason.  There was no specific trigger that I can identify although there were a few additional straws (new potential lumps) that may have contributed to the proverbial camel’s broken back.  None of this is exactly “news” to any of you who know me well or who follow this blog much but these days I try to use these bad times as an incentive to practice mindfulness and get to know myself better.   This posting is as much for my own benefit as it is for anyone else.   There is some consolation in the feeling of progress this gives me.

Early symptoms of the blues include:  increased irritability, decreased energy, a more crampy gut, a reluctance to go to bed, a reluctance to get up and a more gloomy outlook on life.  I hear some of you saying, “Yeah, that sounds like you all right” and if I ever figure out who said that you will be off my Christmas list!

If I start to feel jumpy, nervous or shaky that indicates further slippage.  My pulse rate will be a bit high, my breathing more rapid than usual and I will have trouble sleeping.  The next stage on the way down gives rise to the “You are summoned to the principal’s office” sensation:  weak knees, shakiness and a sinking “What’s going to happen to me?” feeling.  It requires strong mindfulness and concentration for me to focus on things or make decisions.  This is usually the stage at which I will be taking .25mg of clonazepam from time to time, especially before I go to bed.

If I let that go on for long enough I may sink into a state of total incoherent panic complete with clammy hands and rivulets of perspiration.  Definitely Not Fun.  This last stage is mercifully rare.  The last time it happened, a couple of years ago, I was sending out frantic emails to some of my close friends – and I thank you for your prompt, helpful and sympathetic responses.  It turned out that half a milligram of clonazepam was all it took to bring me back to earth but it was a frightening time.

The most helpful observation is that the blues can descend upon me and depart again for no apparent reason and that the associated feelings tend to come and go in waves.  Just knowing this makes it easier to cope:  I know that it won’t last forever.  Furthermore, these are only feelings:  there is no direct threat to my well being.

Another thing I have noticed in the early stages of the blues is the recurrent thought, “Will someone please fix this for me?”  It is a variation on “Mummy!  Kiss it better!” and is not at all helpful.  Having caught myself playing this game I may be able to avoid the trap in future.

So, there is progress.  Now that I know how little clonazepam it takes to settle me I am much more relaxed about using it.  That coupled with all the effort I have put into mind training means that these episodes are shorter and less serious than they used to be and that I function better even when I don’t feel so good.

When the weather clears in my head the world seems filled with possibilities and interest.

News Roundup

Finally,  I would like to say

thank you

once again to all of you who have contributed news tips, offered encouragement or commented on my turgid prose.  It’s good to know someone is reading this stuff, or at least cares that it is getting written.

Posted by: cg00n | January 12, 2012

Dr. No Problem

The results of the CT scan are in:  no visible problems.  This is a relief because You Never Know and it is highly likely that one of these days there will be a visible problem.  However, for now I feel great and it looks as though I will be able to forgo death by melanoma for another year.

We saw Dr. D yesterday.  She is not altogether happy about the side effects of the new drugs (Yervoy aka ipilimumab and Vemurafenib aka PLX 4032) and would rather not inflict them on anyone if she doesn’t have to.  Her experience also suggests that only 3 out of 15 patients tested have the B-RAF mutation necessary to qualify for Vemurafenib, a rather smaller proportion (20%) than the 40% touted in earlier trials.  This is not a whole lot better than the standard treatment, Dacarbazine.  Having said all that she does know of people who have had good (and fairly long-lasting) results, at least from ipilimumab.  She has promised to share any news she gleans from a melanoma conference that she (and Dr. G) will be attending in March.  Anyway, for now we go on as we have: taking out the lumps as they appear.

Speaking of lumps, later in the day we saw Dr. M and just for a change of pace we could find nothing worth cutting off.  The previous wound seems to have healed OK now (after the antibiotics) so we’ve left the next appointment date open.  If nothing else happens I’ll go and see him in 3 months or so just for a checkup.

Now that’s all over for a while I can start planning a few months down the road.  P and I are both going to spend Feb. 4th at a “mindfulness day” where we will eat, sit, lie,  walk and occasionally run while being mindful.  It’s good practice – a sort of mini retreat.  Speaking of retreats, I am going to look into another 1 or possibly 2 week retreat in the spring.  The last one I did was two years ago and I can’t say I’m really looking forward to doing it again.  Spending that long in meditation (including mindful meals, chores, study etc.) is really a lot of work.  However, it is a highly-recommended way to make progress and given how much I have gained from all this mindfulness stuff it is probably best that I grit my teeth and Just Do It.  We are also expecting some friends to visit in late February so there’s lot to keep me amused.  I hope all of you, dear readers, are getting 2012 off to such a good start.

News Roundup

So it goes.  As always I hope you are all staying well and I will also do my best.  Cheers!

Posted by: cg00n | January 3, 2012

Dye Another Day

Happy New Year everyone!

Today saw two minor developments in the continuing saga.  First I got a CT scan, this time without the contrast dye that they usually IV into me.  The last time they did this they were concerned because I sneezed when I was about to leave and they made me sit around in my johnny shirt for an extra 20 minutes, presumably to see if I would catch pneumonia.  Apparently sneezing can be a sign of an allergic reaction to the dye and since this can get fairly fatal they take it pretty seriously.  When I mentioned this to Dr. D she said she would get my future CT scans done without the dye and so it has proved to be.  The whole exercise is very short, now that they don’t have to muck about with the IV.  My next appointment with Dr. D is on the 11th by which time I expect the results to be in.  There does not seem to be any reason to worry.

After this came breakfast and a little while later I was back at Dr. O‘s office getting December’s stitches taken out.  I think she’s starting to worry that if she takes out many more I will unravel completely.  However, this time she was more concerned about a small infection.  They can get quite serious quite quickly in that leg so now I have a week’s worth of antibiotics (which the pharmacist pithily described as smelling like cat’s p**s) to take.

Since there was quite a bit of slack time today I did a fair amount of walking (yes, I am getting a little more exercise these days) and meditating.  My New Year’s resolution, in addition to staying alive, is to work harder on the enlightenment stuff.  I’ll probably sign up for a retreat sometime this spring.

Just for the record, a visit to Dr. L back in December was comfortingly uneventful.  He still thinks I have “beautiful skin”!  I told him I’m not done with it yet.

News Roundup

I am sad to report that our sometimes commentatrix, Randi, died on December 29th, just about exactly one year after K’s mum.  In spite of all the advances this is still a very hard cancer to fight off once it gets a good hold on you.  So far I’ve been luckier than some of my co-sufferers, a fact for which I am very grateful on a daily basis.

That’s all for today.  I’ll drop a post here when I’ve got the scan results.  As always, I wish you all good health, long lives and many of them.

Posted by: cg00n | December 14, 2011

Christmas Comfort

The lump is gone:  good news for Christmas.  Since my last posting a number of things have happened.

I had the stitches removed from the previous two excisions.  It’s a pity one cannot recycle the sutures:  they’re quite expensive and I’ve gone through a lot this year.  A couple of days later Dr. M called to give me the results of the pathology report:  both lumps were melanoma and both had clear margins.  On the whole I treat this as good news these days.  A week or so after that Dr. D called to talk a bit about the proposed chemotherapy.  Her take to this is to reserve systemic chemo (as opposed to locally injected or limb perfusion) for a last resort.  In general, start with the most local procedure one can manage (usually surgical), escalate to the next most local (usually radiation and only then reach for the shotgun.  Apparently the newer drugs are still only available on a compassionate trial basis and I may still be denied them if I’ve had something else.  So, today I went back to Dr. M to show off my newly healed wounds and to ask him to give me another one.  This task he delegated to the usual suspects, a lovely collection of doctors and nurses with such a great sense of humour that I always end up in stitches.

On January 3rd I get my next CT scan the results of which should be known by the time I see Dr. D again on January 11th.   At that point we can revisit the various chemo options and my new year will off to another great start :-^

Meanwhile I continue to meditate and study mindfulness techniques.  A couple of weeks ago saw a small but significant breakthrough when I learned to distinguish between

  1. the problem (having cancer)
  2. the mental state associated with the problem (anxiety)
  3. the worry that I won’t be able to cope with the mental state (panic)

It finally clicked after a day of feeling mildly anxious, a lot of reading and a long, learnéd discussion with P.  I have now been able to accept the anxiety.  What I mean by that is that I’m not just saying “I accept this” but I am also feeling that “It’s OK to be anxious”.  As a result I can still feel the butterflies in my stomach but it no longer bothers me much.  The first day I felt this way I was almost bouncing up and down on my chair with delight:  it was like “I feel cruddy but I don’t care!“.  It has been a wonderfully liberating experience.  Eventually I hope to be able to accept the cancer itself and then I’ll stop feeling anxious about it but I’m not holding my breath.  Lots more work to be done on my head before that happens, I suspect.

News Roundup

Finally, as a sort of Christmas present to the world, I’d like to draw your attention to:

Design of Image-guided, Photo-thermal Controlled Drug Releasing Multifunctional Nanosystem for the Treatment of Cancer Stem Cells

It sounds terribly dry and dusty, doesn’t it?  You really should follow the link.

Have a wonderful 2011 – 2012 transition, whatever form it may take!

 

Posted by: cg00n | November 28, 2011

Chemo on the horizon

On Friday I went to see Dr. G.  This was essentially a followup visit.  We talked about all the lumps removed during the last year and he examined my latest scars.  In the process he found another new lump more or less in the middle of the cluster of previously excised ones.  Much to my surprise he suggested that we talk to Dr. D about starting a course of chemotherapy.  Further discussion convinced P and I that this is probably a sensible move but his suggestion has certainly rattled my cage.

Why chemo?  Why now?

As I mentioned in an earlier posting, I’m running out of skin in some parts of my leg.  Taking out the new lump may well involve a small skin graft and, as Dr. G pointed out, if we can find a lump now it is very likely that there will be more that we have yet to find.  Trying chemotherapy now, while it is not urgent, serves two purposes:

  1. it may prevent unnecessary surgery
  2. we find out whether or not I respond to the drug.

“The drug”, in this case, is likely to be dacarbazine which is quite an old treatment for melanoma.  It is well-understood, well-tolerated and effective in about 18% of  patients.  Here in Canada the health care system won’t consider giving me any of the newer drugs until the older (cheaper) ones have been shown to be ineffective.  However, until the new drugs got regulatory approval here the only way to get the newer drugs was to enroll in a clinical trial and using dacarbazine would  likely render one ineligible for the trial.   So now is probably a good time to try the experiment.  If it works, I win.  If it doesn’t we can still cut the lump out and graft over the wound and we will be able to move right onto the newer drugs when it becomes necessary.

All sounds very sensible, doesn’t it?

What’s not to like?

It is amazing what I can get used to.   Finding a new cancerous lump on my leg, having it cut out and stitched up, caring for the wound for a couple of weeks and then having the stitches out are all just part of my ongoing existence.  Three years ago I would have been horrified at the thought of having to go through all this on a regular basis but now, no problem.  I could keep this up until they’d whittled my leg down to a peg.

Chemotherapy sounds like kicking the whole game up a notch.  It isn’t really, as any rational person can tell instantly.  Regrettably I am not as rational as all that.  At least, parts of me are not.  I haven’t actually suffered an anxiety attack but I have certainly been feeling a bit tense, my heart rate is occasionally higher that usual for no apparent reason, my mouth is a bit dry and the butterflies in my stomach take flight from time to time.  That’s the worst of it.

This minor mental meltdown has the positive effect of getting me to do more work on myself.  Having my cage rattled is probably a good thing from time to time lest complacency sets in and I start taking the good times for granted.  This last few days I’ve been re-reading my notes from the course I took late last year, listening to a bunch of talks about mindful ways to cope and really working on my meditation practice.  It’s all good stuff.

Two realizations hit me in the middle of all this.  The first (call it a failure of imagination if you like, but…) I can’t think of any future diagnosis that would hit me as hard as the one that put this whole show on the road.   The first few days after that were just awful.  That’s a comforting thought:  I have probably dealt with the worst part of my illness already.  Unless you count dying, I suppose.

The second is that I think of myself as a fixer:  it’s what I do, it’s who I am.  I fix things.  Unfortunately, the disease I’m dealing with is not fixable, certainly not by me.  I believe this is one of the reasons I have so much angst.  In order to stop suffering, in Buddhist terms, what I need to do is to let go of this part of my self-definition.  Easier said that done but at least it is something else to try.

News.

Not worth calling this a roundup since there’s only one noteworthy item.

Ms. S.L of Calgary pointed out ACT, another mindfulness-based approach to mental well being.  P is reading a book called The Happiness Trap which is an introduction to the therapy.  It contains much that we have both come across but also some new information and a whole new way of talking about the subject.  It is, in P’s opinion, a good book, well worth looking at if you’re interested in mindfulness.  From my perspective the timing could hardly be better!

Posted by: cg00n | November 23, 2011

Cruising towards Christmas

The cruise was great!  No, we didn’t take A with us.  We let her semi-fend for herself with a little help from our friends.  Our time was very relaxing with good food and interesting places to visit.  As a total break from our normal “you won’t get me on one of those things” approach to excursions we took a rather fast-and-furious zip line tour of a tropical forest.  The only part I found worrying in general was the final approach to each platform.  I had visions of laminating myself to the tree trunk.  The whole experience was a good test of my state of mind.  Not so very long ago I would have been fighting down the anxiety and vertigo.  Getting through this whole trip with barely a murmur of dissent from my amygdala gives me great confidence that I am on the right mental track.

Physically I’m doing pretty well too, if you exclude the filthy cold I picked up on the way home.  The increased margin on the previous excision seems to have done the trick, so that one’s clear.  Two new lumps were already gestating before we left on the cruise but there was little point in panicking so I got them taken out right after we got back.  One of them was really close to my shin bone which makes getting a good margin difficult.  The stitches come out in about two weeks so I’ll probably get the pathology report then.

I am allowing myself a little hope that we might be getting ahead of the melanoma and that I may be lucky enough to beat it without a lot more intervention.  Apparently this does happen sometimes and all the activity since my isolated limb perfusion has been in my lower right leg which may be an indication that it is not spreading.  On the other hand this could be just a lull.  Sometimes melanoma will go dormant for up to a few years and then suddenly reappear.  Oh well, the hell with it.  I probably won’t die today.  It’s already 8pm.

News Roundup

In other good news I didn’t actually notice any bad news on the melanoma front except for this one.  Peace be upon him:  he put up a good fight.

 

Posted by: cg00n | October 5, 2011

Marginal Improvement

Just a quick update to say that I saw the surgeon again today and he has taken a bit more margin around the troublesome excision.  That should do the trick, at least until the next time I find a lump.  It was a bit painful:  I seem to need quite a lot of local anaesthetic.  But the people are all lovely and I was in and out in no time.  So, from lump to limp:  another 18 days until the stitches come out.  Ain’t life a bitch?  At least I’ll probably be able to make that cruise we had planned in early November.

Yesterday we saw Dr. D, the oncologist.  She make the slightly disturbing observation that, in her recent experience, PET scans have missed signs of cancer that CT scans have picked up.  Apparently oncologists at other institutions  have been noticing this too.  My PET scan earlier this year was all clear but now I wonder how far I can trust it.  I’ll get a CT done in January, after the Christmas rush is over.

For now life returns to normal.  Take care of yourselves, all of you.

Posted by: cg00n | September 29, 2011

Margin of Error

Got the pathology report (verbally) today.  OK news, bad news in this case.  One of the two sites excised had clear margins, which means they took all the melanoma and a bit of uninfected skin just to be sure.  The other site had melanoma right out to the edges.  That means we have to do something more, probably take a bit more skin out surgically.   That, in turn, may require a skin graft or something.  I don’t know yet but I hope to get an appointment with Dr. M next week so that we can talk about it.

There is always a little frisson of anxiety when this kind of news lands, a shiver up my spine.  It doesn’t matter how inconsequential the bad news is, I get this feeling.  Not just for my own bad news either:  I remember feeling that when the hospital called to say that my father probably wouldn’t make it through the night; the first time I got fired; when I realized a long-term relationship was on the rocks.  A year or two ago this would have been the trigger for a day or two of mild to moderate anxiety.  Now it is much easier to “drop the story line” that follows right behind and with that goes most of the worry.  Maybe there are people who are better at just bouncing this stuff off but I haven’t figured out how to do that 100% yet.  I’ll work on it.

Of course this is all very inconvenient.  For the second time in recent memory we will probably have to write off a cruise ship vacation (last time was in 2009) and I should probably scramble to get some fall cleanup done in case I am laid up for repairs.  At least P’s mum is doing OK on her course of chemo so P has only one of us at a time to worry about.  Somehow we’ll muddle through, I expect.  The ultimate axe does not appear to be falling just yet.

News Roundup

A couple more hopeful developments on the melanoma front:

More dramatic improvements are taking place in the field of general cancer treatment:

Enough for now.  Mr. R.J of Calgary complimented me on my ability to procrastinate until a cure is found for what ails me.  I’ll keep working on that… starting tomorrow.

Posted by: cg00n | September 8, 2011

It’s been a while

Ironically, no sooner had I completed the previous post I discovered another lump, the first in almost 6 months.  A few days later there was another little cluster of two.  All are at about mid-calf  level and near to previously active sites so they don’t pose much of a worry.  Anyway, I had them all carved out yesterday so now I just have a sore leg to complain about.  This is all so routine by now that I scarcely wince when they stick the knife in.  A few days of discomfort followed by a week or two of careful movement to avoid ripping out the stitches and then life returns to normal.  The only thing that might become an issue if this keeps up, as Dr. M said, is that I will have to grow some more skin.  Another bridge to cross when (if) I come to it.

Meanwhile P’s mum is still poorly but has at least started a course of chemo:  only time will tell if it is helping.  My good friend Mr. J.P of Calgary has suffered the loss of his elderly father:  I’m sure you will all join me in offering condolences.   Many of you will also be well aware of the death of Jack Layton, one Canada’s political party leaders, due to cancer:  he wrote a very moving open letter in which he encouraged fellow sufferers to stay positive:

… please don’t be discouraged that my own journey hasn’t gone as well as I had hoped. You must not lose your own hope. Treatments and therapies have never been better in the face of this disease. You have every reason to be optimistic, determined, and focused on the future. My only other advice is to cherish every moment with those you love at every stage of your journey, as I have done this summer.

In better news, our sometimes commentrix, Randi (she’s the cute one in the middle), seems to be holding up pretty well, a testament to her “never say die” spirit and the support of her family.  As if she had anything left to prove she was the first person I heard from that Vemurafenib (PLX 4032, or something like it) has been given US FDA approval for melanoma treatment.

On the whole it has been a great summer.  Last month we had a visit from some good friends and another couple are likely to put in an appearance at the beginning of October.  We’re planning a short Caribbean cruise in November and will probably end up in TO for Christmas so we can spend a little time with P’s family.  Lots of things to keep me entertained.

News Roundup

Not much this time around, but then it’s only been 3 weeks since the last roundup.  Patience, peeps!

That’s it for now.  Stay healthy, my friends.

Posted by: cg00n | August 16, 2011

Summertiiiime, and the living is easy…

Two months since I last posted here.  Amazing how the time flies.  A lot has happened in that period but none of it relates to bad health on my part.  Two doctors have examined me and can find nothing at all to complain about.  In addition to the good news Randi seems to be making progress, Ian is still organizing golf tourneys etc. and I hear that Mr. P.T of Halifax is doing OK on one of the BRAF-targeting drugs.

In the not-so-good news department, P‘s mother (who is quite elderly) has been diagnosed with lung & liver cancer of some kind and one of my dear friends suffered the loss (to cancer) of two close relatives in the last year.  Every so often it is useful to be reminded that it’s not just me that’s dying and that, sooner or later, it will be my turn.  But not today!

Did anyone take a look at the Burzynski article or the online movie I mentioned in the previous post?  Seriously, I’d be interested to hear whether people think he is onto something or just another pseudo-scientist.

News Roundup

First, a number of edutainment items.  I learned from Miss Melanoma that there is to be a new movie about coping with cancer.  It is called 50/50, as in “the odds of your survival are…”.   The trailer looks really interesting although I’m not sure I could cope with the emotional overload of watching it on a big screen:  I may have to wait for the DVD.  Speaking of odds, a recent xkcd comic does a good job of  explaining the statistics  (thanks to Dr. D.L of Calgary for that pointer) and here’s a sad but inspiring story about a young man who failed to beat them.  The New York Times also has a good piece illustrating some theories regarding the mechanisms underlying cancer.

Now, on to the hard stuff – a bunch of items specific to melanoma:

Due to limited time, space and patience I have cut back on the number of items I collect related to other cancers but there are still a number of very interesting developments:

I hope all that proves helpful to someone or other.  Knowing that there is so much progress in so many small but important ways helps me to remain optimistic that I may have a couple of decades in me yet.  As always, thanks for your support and please check back here from time to time.  You know there is an RSS feed too, right?

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