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
Tuesday, 28 June 2011
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
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
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