Thursday 31 May 2012

Everyone but Stephen King gets writer's block...

I owe you an update.  From August.  I know, that is a long time ago... but I have some pages and I think it will be worth it when you get it.

Intrigue, foreign travel, dire straits, and a hard to understand Russian.  Plus cancer news!

Can you please bear with me until I can get it together? 

Saturday 17 December 2011

Christmas mini-update

Alive and Kicking - Simple Minds

Merry Christmas and Happy Holidays!

I am still here and things are generally good.  A lot of people have been asking for an update and I will write a more detailed one but it has been awhile and there is a lot to type and it is a busy time at Christmas.

Suffice it to say that I am up and about, working on my alternative treatments, and waiting for a drug trial that will hopefully occur in February.  I am still laying low for the most part to conserve energy and to focus on getting better but I do appreciate the e-mails and phone calls (so sorry if I miss your Christmas party or other group events).

I promise a more detailed update sometime after Christmas.

Until then, all the best to you and your families!

Cheers,
Rob

Friday 19 August 2011

The Bitch is Back

The Bitch is Back - Elton John

Hi all,

Not going to get into a lot of details other than to say that the
cancer is back.

I am looking into alternative options (thanks to those who have
already recommended some) so if you happen to know anything good from
friends or family, I would love to hear about it.

I am already looking at Forsythe in Reno, Burzynski in Houston and
Bill O'Neill in Ottawa.

Cheers,
Rob

Tuesday 28 June 2011

How to throw your friends under the bus...

There were some complaints on the length of the last update so in
order to allow everyone to read this one in its entirety I have made
every effort to keep this short (although you would think that Kevin
could just print this off at the office, keep it in the washroom and
finish it all in no time).

Anyway...

Shaman says I am not dead yet... but still very itchy.

That is all.

Cheers,
Rob

Sunday 12 June 2011

Cancer Sucks... and so does Postherpetic Neuralgia

Another update on what is going on... my apologies in advance for the Tolstoyesque length so I have made mini chapters.  For those who are impatient or do not have time to read all of it, skip to the last chapter.

The Naturopath Experience

The Shaman has been doing his good work and making me feel pretty good (pneumonia aside) but his diet is a tad restrictive and I had fallen to a mere 150 lbs and was looking a little too heroin chic for some peoples' liking.  It was suggested to me to try out a Naturopath/Homeopath to get some dietary suggestions and perhaps some tinctures to clear up any other remaining issues and gain some weight.

It started out well enough, with the usual discussion of my current health and what my goals were going forward.  Then the Naturopath took some of my blood to put on slides and look at under an electron microscope.  Kind of cool. 

Had a big hit of nostalgia for my old high school science classes and it was interesting to look at my own blood under the scope.  For the first 10 minutes anyway.  Then it started to get stale as she wheeled back and forth on the slide showing me what my problems were (funny shaped red cells, red cells grouping together, white cells not being active enough, striations, specks, globules, and other weird things) and comparing them to this printed page of "problems".  This went on for 1.5 hours.

Just in case you missed it, please let me repeat: ONE and a HALF HOURS of looking at blood on slides.  Suddenly seeing Johnny Depp do Pirates 4 does not seem like such a comparative waste of time.

By the time we had finished discussing treatments and diets (EVEN MORE restrictive than the Shaman's - how does one live on potato soup 2X a day?) I had been trapped in the office for almost 3 hours.  When I was told the cost of her time and the various tinctures and supplements, I quickly paid.  After all the ransom was less then what is requested by most of the Mexican drug gangs so I figured I had gotten off cheap.  FREEDOM!  Yes, freedom never felt so good.

I am afraid that I may be suffering some adverse effects from my time in captivity though.  Stockholm Syndrome is a common occurrence to those who have been held against their will.  They say you start to relate to your captors or something.  Not sure what that means exactly... but I am going back for meeting #2 next week.  I can only hope it goes as well as the first.  I LOVE Naturopathy, don't you?

Shingles - God I wish it meant just re-doing the roof

I made the mistake of downplaying the Shingles in my last missive (#11) and talked about wearing turtlenecks in the summer.  Well, the Shingles weren't really the problem.  They have cleared up fairly nicely after two doses of anti-virals and the use of a steroid (that started the issue in the first place).  It is that Shingles can lead to postherpetic neuralgia.  This typically only affects 15% of older sufferers (over 60) OR people with compromised immune systems...  like someone who had cancer.

What is postherpetic neuralgia?  Well the wiki on it describes it thus:  Postherpetic neuralgia is thought to be nerve damage that causes nerves in the affected dermatomic area of the skin to send abnormal electrical signals to the brain. These signals may convey excruciating pain, and may persist or recur for months, years or until death.

Not a bad description although excruciating might be a tad severe.  I was both very itchy (which led to ridiculous scratching) and in constant pain (about 2 or 3 on the pain scale [out of 10]) but this was bearable - it was the occasional ratcheting up to 7 that was problematic as it was a bit more debilitating and was affecting my sleep.

The scratching was interesting, as if I did it right (at least at the beginning), I could get such an incredible wave of pleasure at relieving the itch.  The problem was that if you went too far with the scratching, not only did you damage your skin, but you tweaked the nerve so it was a complete S&M session of pleasure and then pain. 

Maybe that is wrong.  With S&M is it pain and then pleasure?  Can someone who partakes please enlighten the group?  Just hit reply all.  No judging here.

(Quick aside - I have been told several times that these updates could be the basis for a book and a couple of times that if I were to do a book I would need to add some sex to spice it up.  As of this moment, the above comments are the only approved sexual mentions I am allowed.  Please discuss with Claudine if you feel more is required.)

Unfortunately scratching the right amount is no longer really possible as the relief is short lived, if at all, and the pain is now almost guaranteed.  I am really trying to curtail the scratching but sometimes it is impossible.  This causes the occasional "pain take".  So please note, if you see me wince, it is not a direct commentary by me on your conversation or lame joke.  It is pain.  Horrible excruciating pain.

Yes, it might be the pain of me having to listen to your weak attempts at humour, but I am more susceptible to the pain receptors now so it is not my fault.  It really is yours.  Seriously.  Watch some Russel Peters on YouTube or something and get some new material.

Did I mention that the constant pain has got me a little grumpier and short tempered than usual?

I am on a new drug in order to try and minimize the pain.  So far it has had limited effectiveness as the itching has increased, as has touch sensitivity, but the deep rooted nerve pain (7 out of 10) has decreased significantly.  I have to wait to see if it is a time based recovery for the nerve endings or if I have to increase my dosage.

In the meantime, I am trying to minimize skin contact to my left shoulder.  This means going all Matthew McConaughey and not wearing a shirt (just the weight of the shirt adds to the pain, now a standard and annoying 3 or 4, as well as increasing the urge to scratch).  This allows a new series of great games though... count Daddy's ribs, find the surgery scars and connect the tattoo dots.  Fun for all ages!

While this may sound horrible, and in some ways it is, the words of my new mentor still ring in my ears and I truly believe this to be true:  "Life is sweet, braw". 

Ah, Matthew McConaughey just does not get enough credit.  Yes, he did make Sahara and Fool's Gold but Dazed and Confused is all we really need to know, right?  Because high school girls really do remain the same age.

One last thing for those of you who are tracking at home:
Got Pneumonia and was not diagnosed which also inflamed the Radiation Pneumonitis.
Was given steroids to treat the Radiation Pneumonitis.
Steroids decreased my immune system.
Got Shingles due to decreased immune system.
Got anti-viral to minimize damage of Shingles.
Got anti-bacterial to treat Pneumonia (now diagnosed).
Got another anti-viral for the Shingles due to the itching.
Got Postherpetic Neuralgia due to the Shingles and a compromised immune system (due to the cancer and subsequent treatments)
Got a new medicine (Lyrica) to try and minimize the pain of Postherpetic Neuralgia.

Yeah Western Medicine!

Speaking of which, that leads to our last chapter (thank God) - results.

Results of Tests and such

My most recent CT scan results were as follows.... no significant change in the tumor.  Lots of other stuff going on in the rest of the chest (due to what exactly - Radiation Pneumonitis?  Pneumonia?  Fibrosis? What?).

What this means:  I may never have a "normal" CT scan again - there will always be something that they cannot tell exactly what it is.  But at this time the doctors do not think there is any active cancer that they can tell is growing.  They would not go as far as to say remission (can you say CYA) but this is still very good news.

With the Pneumonia gone and despite the lack of sleep and nerve pain, I am feeling pretty good.  I am getting more active and my blood counts continue to improve - I am not up to normal red blood cell counts yet but should be back to normal by the end of the summer.

Next CT scan will not be until November or so and that should provide some further confirmation of my status but until then I am in waiting mode but going with the "I am currently cancer free" approach until something says otherwise.  As long as I continue to feel strong and improve my health, strength and weight (now over 160 lbs) then I am going to work hard to get back to normal and plan on getting back to "real life".

So remember - Life is Sweet, Braw.

Cheers,
Rob

Wednesday 18 May 2011

Maybe this can be made into a show... apparently the CBC does not care if anyone watches...

Ha.  Ha.  Ha.  It 'tis to laugh.

So the radiation pnenumonitis that has been such a pain spiked because
I had gotten pneumonia.  For the last three weeks.  They decided to do
a culture test... somehow they figured this out despite my not having
any culture... badumpcha!  Anyway...it's walking pneumonia because I have
been walking... and swimming... and doing lots of things I apparently should not have been doing.

Which I thought was a great idea for a show.  Walking Pneumonia.  A
horror drama.  I immediately pitched it to a production company I know
but apparently there was a big hit show this year called The Walking
Dead about these slow walking zombies that are trying to eat your
brains.  It was suggested that this was scarier than a lurching sick
guy coughing phlegm being out and about when he should be in bed.

I do not know about you, but don't you think think that seeing an
overly skinny, sickly looking dude moving slowly towards you down the
airplane aisle, coughing up great big wet wads of phlegm and you
realize that the only free seat still available on the plane is...
beside YOU!!!

AHHHHHHHHHHHHH!  I am having nightmares just thinking about it... and
I am the skinny dude with cough.

Anyway, I am now on another course of antibiotics to be followed by a
course of penicillin (just to be sure this time).  The reality is that
this diagnosis is actually good because you like to know why you are
not feeling as good as you should be (or were last week).  I have been
told I am pushing things (the cancer group I went to looked at me like
I had two heads when I mentioned I was out and about after a stem cell
transplant in January) so I am going to try and be a better patient.
It is just hard.  When you learn to look at each day as a gift and
that there is joy everywhere (even in this weather), you really do not
want to spend it inside taking it easy.  But, patience is a virtue and
discernment is something else probably good.  Like chicken wings.

I hope this finds you all healthy and happy (or healthier and happier
than when I last wrote).

Cheers,
Rob

Sunday 8 May 2011

One way, or another, it's going to get you, it's going to get you, get you, get you

Hello all,

I have been a bit remiss with the updates so I will dive in with what
is going on:

I had my Hickman Line removed.  Not really a big deal - a little local
freezing of the area, a LOT of tugging on the line (seriously, I
thought the doctor was trying to land a record sized marlin) and then
nothing.  The doctor then showed me the foot and a half of line that
was in my chest, still covered with some blood.  I was tempted to
cradle it in my arms and take a photo but apparently that is not the
standard process after getting these things removed.  Oh well.  Yet
another opportunity for a relatively original Facebook profile picture
gone.

I had two PET scans.  Both were considered inconclusive as they did
light up but this was at least possibly due to the radiation
pneumonitis.  It did mean I did not qualify for the drug study that I
was looking into but the reality is this is not necessarily a bad
thing.  This drug could have been a gateway drug and who needs to be
all hooked on phase 3 clinical cancer trials - constantly searching
for the next new cancer drug to cure my fix?  Best to just pass on the
whole process, I say.

I mentioned the radiation pneumonitis - I got a chest cold and that
seemed to spark a recurrence of the pneumonitis.  Not as bad as the
first time which completely knocked me out but it certainly weakened
me.

We went down to Florida to get some much needed sun in the middle of
March (and get away from Toronto's one day "It's Spring!" teases
before slamming us with frigid, cold, rainy weather).  The kids loved
the warmth, the beach and especially the pool.  It was great to get
away but I was having issues with the cough and fatigue down there and
had to go see a doctor.

I had an interesting discussion with him... the probable cost of my
treatments for the lymphoma would exceed $500,000 (and possibly get to
$1 million) in the US.  Try paying for that with no insurance... ouch.
 I really wonder why so many Americans were against universal health
care.

Anyway, when I returned I got a script from my doc for a steroid to
minimize the inflammation of the pneumonitis.  Unfortunately the
steroid also affects the immune system (lowering it) and allowed me to
get my first case of Shingles (adult chicken pox if you have had
chicken pox as a kid).

You kind of have to laugh.

I am now on an antiviral to minimize the effect of the Shingles.  It
does not look pretty but it does not seem to bother me too much.  It
is not particularly contagious as unlike chicken pox it is not
airborne.  You would have to touch an open blister (and almost none of
mine have opened) and I am wearing turtlenecks to cover up anyway.  It
is also seemingly only contagious to those who have never had chicken
pox.

Anyway, this could take a week or weeks to clear up (everyone is
different) so of course we suddenly finally get some nice weather here
in Toronto so my turtleneck style choice looks totally ridiculous.
Ahhh, what we we do for fashion.  Anyone who wants to support me by
wearing turtlenecks as the temperature approaches 20 degrees Celsius -
 feel free to join the revolution!  Summer is obviously the time for
neck wear!

Anyway - the bottom line is this, I feel pretty strong despite some
complications and I am in a good head space.  I hope that this finds
all of you in a similar situation.

To all the mothers out there, have a very happy Mother's Day.  I know
that my mom, my mother in law, and my wife all deserve it, they are
fantastic people who do a tonne and sacrifice a lot - especially for
me.  So, please accept my thanks from the bottom of my heart - I
definitely do not say it enough.

All the best,
Rob