Update: Follow-up to radiation & violin lessons :)

Hi all;

For future Google searches, I had a malignant paraganglioma that was
initially diagnosed as glomus jugulare - Surgery in Dec 07 to remove the
tumour (which at the time, was thought to be benign) - When they went in,
they found it was cancerous and had spread to several lymph nodes and bits
of bone.

Six weeks of radiation ended May 07, 2008 - Went to see the oncologist
today for a follow-up and he said everything seemed to be coming along
nicely. I mentioned the odd little headaches I've been getting inside the
surgical site, infrequently, and it was to my great relief that he said it
really sounded like nerves making re-connections, rather than additional
damage occurring, given their frequency (infrequent) and severity (Sharp,
but not debilitating) and length (not overly long - usually 2-5 minutes)

On the life-affirming side, my daughter and I started violin lessons today.

You know, for an absolute, rank beginner, I ain't half-bad (I can play
"Twinkle Twinkle Little Star after my first day - Not exactly Bach, but for
me, a kicker )

--
Marc Bissonnette
Looking for a new ISP? http://www.canadianisp.com
Largest ISP comparison site across Canada.

Marc Bissonnette wrote:

> [...]
> Six weeks of radiation ended May 07, 2008 - Went to see the oncologist
> today for a follow-up and he said everything seemed to be coming along
> nicely. I mentioned the odd little headaches I've been getting inside the
> surgical site, infrequently, and it was to my great relief that he said it
> really sounded like nerves making re-connections, rather than additional
> damage occurring, given their frequency (infrequent) and severity (Sharp,
> but not debilitating) and length (not overly long - usually 2-5 minutes)

Great to hear reassuring news.
What did he say about the continuid drooping?

> On the life-affirming side, my daughter and I started violin lessons today.
>
> You know, for an absolute, rank beginner, I ain't half-bad (I can play
> "Twinkle Twinkle Little Star after my first day - Not exactly Bach, but for
> me, a kicker )

LOL Great start
I forget which song we learned for piano - it was so long ago and there was no
room in our home for a piano, so it was abandoned.
The tunes I started to learn guitar were (i think) WipeOut (forget the band)
and House of Rising sun (ad nauseum). LOL
Mother was very patient, but we were in upstairs bedrooms, so she only heard it
if she came upstairs. .
Thanks for update; hope to hear more about how the violin lessons are going.
J

Marc Bissonnette wrote:
> Hi all;
>
> For future Google searches, I had a malignant paraganglioma that was
> initially diagnosed as glomus jugulare - Surgery in Dec 07 to remove the
> tumour (which at the time, was thought to be benign) - When they went in,
> they found it was cancerous and had spread to several lymph nodes and bits
> of bone.
>
> Six weeks of radiation ended May 07, 2008 - Went to see the oncologist
> today for a follow-up and he said everything seemed to be coming along
> nicely. I mentioned the odd little headaches I've been getting inside the
> surgical site, infrequently, and it was to my great relief that he said it
> really sounded like nerves making re-connections, rather than additional
> damage occurring, given their frequency (infrequent) and severity (Sharp,
> but not debilitating) and length (not overly long - usually 2-5 minutes)
>
> On the life-affirming side, my daughter and I started violin lessons today.
>
> You know, for an absolute, rank beginner, I ain't half-bad (I can play
> "Twinkle Twinkle Little Star after my first day - Not exactly Bach, but for
> me, a kicker )
>

Wonderful news. Let us know when your ready for Carnegie Hall :-)

--
Janet Wilder
Bad spelling. Bad punctuation
Good Friends. Good Life

"Marc Bissonnette" <dragnet\_@_/internalysis.com> wrote in message
news:Xns9AD7D8BF3200Ddragnetinternalysisc@216.196. 97.131...

>
> On the life-affirming side, my daughter and I started violin lessons
> today.
>
> You know, for an absolute, rank beginner, I ain't half-bad (I can play
> "Twinkle Twinkle Little Star after my first day - Not exactly Bach, but
> for
> me, a kicker )
>

That ROCKS, Marc. Today, the cancer support group starts painting classes
for members and their caregivers, so Rob and I are signed up to learn how to
fling paint at a canvas. I like it. We're taking Mandy along to take
pictures if she wants.

Pam S.

Hey Marc,
That's great going! Learning Violin with your daughter will be indeed
enjoyable. All the best.

I reckon the nature of the disease and the treatment there after is
such that the person who goes through it, after recovery, is itching
to do things which ere ignored/postponed/put on the back burner for
long and he ends up doing things which gives him max joy along with
giving pleasure to the others around him.
I also wait eagerly to start my outings (having completed my rad-chemo
treatment for ca nasopharynx) and lets see where it leads!
All the best and have a grand time!
Ciao,
Sam

samgr8times@gmail.com fell face-first on the keyboard. This was the result:
news:e282f323-0042-4ff3-82ba-a0eaf24a16b1@b1g2000hsg.googlegroups.com:

> Hey Marc,
> That's great going! Learning Violin with your daughter will be indeed
> enjoyable. All the best.
>
> I reckon the nature of the disease and the treatment there after is
> such that the person who goes through it, after recovery, is itching
> to do things which ere ignored/postponed/put on the back burner for
> long and he ends up doing things which gives him max joy along with
> giving pleasure to the others around him.
> I also wait eagerly to start my outings (having completed my rad-chemo
> treatment for ca nasopharynx) and lets see where it leads!
> All the best and have a grand time!

Hey Sam;

First off: Way to go on finishing the rad and chemo - It's a relief, eh ?


Next off: You hit the nail *right* on the head: The big C, no matter how
"big" or "small", makes you think, reevaluate and reassess things done in
life so far. For me, in addition to that, losing one ear/hearing made me
realize that music is something that would really, really REALLY suck to
never hear again. You wouldn't believe the variety of music I listened to
before going into surgery - Everything from rock to country to punk to
orchestra to spoken word to folk to music-from-many-other-countries - just
to have a memory of music in both ears

Now, with the violin tucked under my chin, I get the benefit of hearing it
from my left ear, as well as the vibrations from the instrument travelling
through my skull to what's left inside the right ear

I never really thought about it before, but the violin really does make
some wonderful sounds



--
Marc Bissonnette
Looking for a new ISP? http://www.canadianisp.com
Largest ISP comparison site across Canada.

Marc Bissonnette <dragnet\_@_/internalysis.com> wrote in
news:Xns9AD96EC61A7ABdragnetinternalysisc@216.196. 97.131:

> samgr8times@gmail.com fell face-first on the keyboard. This was the
> result:
> news:e282f323-0042-4ff3-82ba-a0eaf24a16b1@b1g2000hsg.googlegroups.com:
>
>> Hey Marc,
>> That's great going! Learning Violin with your daughter will be indeed
>> enjoyable. All the best.
>>
>> I reckon the nature of the disease and the treatment there after is
>> such that the person who goes through it, after recovery, is itching
>> to do things which ere ignored/postponed/put on the back burner for
>> long and he ends up doing things which gives him max joy along with
>> giving pleasure to the others around him.
>> I also wait eagerly to start my outings (having completed my
>> rad-chemo treatment for ca nasopharynx) and lets see where it leads!
>> All the best and have a grand time!
>
> Hey Sam;
>
> First off: Way to go on finishing the rad and chemo - It's a relief,
> eh ?
>
>
> Next off: You hit the nail *right* on the head: The big C, no matter
> how "big" or "small", makes you think, reevaluate and reassess things
> done in life so far. For me, in addition to that, losing one
> ear/hearing made me realize that music is something that would really,
> really REALLY suck to never hear again. You wouldn't believe the
> variety of music I listened to before going into surgery - Everything
> from rock to country to punk to orchestra to spoken word to folk to
> music-from-many-other-countries - just to have a memory of music in
> both ears
>
> Now, with the violin tucked under my chin, I get the benefit of
> hearing it from my left ear, as well as the vibrations from the
> instrument travelling through my skull to what's left inside the right
> ear
>
> I never really thought about it before, but the violin really does
> make some wonderful sounds
>
What do the neighbors say? We had a neighbor growing up who took violin
lessons. I wish he had been as talented as you...

I had an experience post surgery with nerves reconnecting that sound
similar to yours. Area was partially numb before the pain & now is near
normal.

Glad you are doing some fun things. Always nice to have someone to
share it with.

Fig

Figgertoes <agent01413@my-deja.com> fell face-first on the keyboard.
This was the result:
news:Xns9AE06CD5736CAagent01413mydejacom@216.168.3 .44:

> Marc Bissonnette <dragnet\_@_/internalysis.com> wrote in
> news:Xns9AD96EC61A7ABdragnetinternalysisc@216.196. 97.131:
>
>> samgr8times@gmail.com fell face-first on the keyboard. This was the
>> result:
>> news:e282f323-0042-4ff3-82ba-a0eaf24a16b1@b1g2000hsg.googlegroups.com:
>>
>>> Hey Marc,
>>> That's great going! Learning Violin with your daughter will be
>>> indeed enjoyable. All the best.
>>>
>>> I reckon the nature of the disease and the treatment there after is
>>> such that the person who goes through it, after recovery, is itching
>>> to do things which ere ignored/postponed/put on the back burner for
>>> long and he ends up doing things which gives him max joy along with
>>> giving pleasure to the others around him.
>>> I also wait eagerly to start my outings (having completed my
>>> rad-chemo treatment for ca nasopharynx) and lets see where it leads!
>>> All the best and have a grand time!
>>
>> Hey Sam;
>>
>> First off: Way to go on finishing the rad and chemo - It's a relief,
>> eh ?
>>
>>
>> Next off: You hit the nail *right* on the head: The big C, no matter
>> how "big" or "small", makes you think, reevaluate and reassess things
>> done in life so far. For me, in addition to that, losing one
>> ear/hearing made me realize that music is something that would
>> really, really REALLY suck to never hear again. You wouldn't believe
>> the variety of music I listened to before going into surgery -
>> Everything from rock to country to punk to orchestra to spoken word
>> to folk to music-from-many-other-countries - just to have a memory of
>> music in both ears
>>
>> Now, with the violin tucked under my chin, I get the benefit of
>> hearing it from my left ear, as well as the vibrations from the
>> instrument travelling through my skull to what's left inside the
>> right ear
>>
>> I never really thought about it before, but the violin really does
>> make some wonderful sounds
>>
> What do the neighbors say? We had a neighbor growing up who took
> violin lessons. I wish he had been as talented as you...
>
> I had an experience post surgery with nerves reconnecting that sound
> similar to yours. Area was partially numb before the pain & now is
> near normal.
>
> Glad you are doing some fun things. Always nice to have someone to
> share it with.

I practice in my office with the windows closed I have a feeling it's
going to just be me moving on with violin, though - I'd made a deal with
my daugther: If we both accomplished each week what the teacher said,
we'd go to Harvey's for supper after each lesson - this week was simply
the A scale and the first half of "twinkle twinkle little star" - So
I've got that down pat, whereas my daughter hasn't touched the
instrument. Ah well.

It's reassuring to hear a nerve reconnecting story - How long did it
take for you ? I'm at 7 months now and still nothing on the right side
of my face. I've decided to grow a beard in my one little attempt at
vanity to make the droop not as noticeable. Strangely enough, after the
radiation, my beard actually comes in full - my entire life before this
cancer thing, every time I tried to grow a beard, it looked like I had
mange (Patchy beard all over the place) - At this rate, I could give
Santa a run for his money in the parade this Christmas


--
Marc Bissonnette
Looking for a new ISP? http://www.canadianisp.com
Largest ISP comparison site across Canada.

On Jul 19, 1:43*pm, Marc Bissonnette <dragnet\_@_/internalysis.com>
wrote:
>
> It's reassuring to hear a nerve reconnecting story - How long did it
> take for you ? I'm at 7 months now and still nothing on the right side
> of my face
I recently had basal cell remove from my forehead. I asked about
numbness and nerve regeneration. 6 Months? My MD raised an eyebrow
and said,........"mmmm 6 months. I would say a year or a year and a
half, maybe two. And there is the possibility it will not
regenerate."
Be like me, and plan on the 1 - 2 years and it will be working! And
have patience. After all you have been though, this is not huge in
the scheme of things. God bless.

sheder1 <turtletrot1@bellsouth.net> fell face-first on the keyboard. This
was the result: news:1e33ba33-2cb1-4d0e-ba35-0f4fdf791a63
@j22g2000hsf.googlegroups.com:

> On Jul 19, 1:43*pm, Marc Bissonnette <dragnet\_@_/internalysis.com>
> wrote:
>>
>> It's reassuring to hear a nerve reconnecting story - How long did it
>> take for you ? I'm at 7 months now and still nothing on the right side
>> of my face
> I recently had basal cell remove from my forehead. I asked about
> numbness and nerve regeneration. 6 Months? My MD raised an eyebrow
> and said,........"mmmm 6 months. I would say a year or a year and a
> half, maybe two. And there is the possibility it will not
> regenerate."
> Be like me, and plan on the 1 - 2 years and it will be working! And
> have patience. After all you have been though, this is not huge in
> the scheme of things. God bless.
>

Hey thanks for that. Seven months an still nothing is frustrating, but it's
nice to know it might not be forever.


--
Marc Bissonnette
Looking for a new ISP? http://www.canadianisp.com
Largest ISP comparison site across Canada.

Marc Bissonnette <dragnet\_@_/internalysis.com> wrote in
news:Xns9AE18E19F5D51dragnetinternalysisc@216.196. 97.131:

> sheder1 <turtletrot1@bellsouth.net> fell face-first on the keyboard.
> This was the result: news:1e33ba33-2cb1-4d0e-ba35-0f4fdf791a63
> @j22g2000hsf.googlegroups.com:
>
>> On Jul 19, 1:43*pm, Marc Bissonnette <dragnet\_@_/internalysis.com>
>> wrote:
>>>
>>> It's reassuring to hear a nerve reconnecting story - How long did it
>>> take for you ? I'm at 7 months now and still nothing on the right
>>> side of my face
>> I recently had basal cell remove from my forehead. I asked about
>> numbness and nerve regeneration. 6 Months? My MD raised an eyebrow
>> and said,........"mmmm 6 months. I would say a year or a year and a
>> half, maybe two. And there is the possibility it will not
>> regenerate."
>> Be like me, and plan on the 1 - 2 years and it will be working! And
>> have patience. After all you have been though, this is not huge in
>> the scheme of things. God bless.
>>
>
> Hey thanks for that. Seven months an still nothing is frustrating, but
> it's nice to know it might not be forever.

I don't remember how long, Marc. Mine was on a thigh & not so
bothersome as yours, just a strange dead feeling. I took a tai chi
class & somehow that seemed to trigger the reconnection - with a
vengence. After each class, I would have brief but intensely painful
episodes as feeling was restored. I don't know how the tai chi did that,
but I am convinced it did.

Meanwhile, maybe they have Santa suits on sale in July?

Fig

Marc Bissonnette wrote:

> sheder1 <turtletrot1@bellsouth.net> fell face-first on the keyboard. This
> was the result: news:1e33ba33-2cb1-4d0e-ba35-0f4fdf791a63
> @j22g2000hsf.googlegroups.com:
>
> > On Jul 19, 1:43 pm, Marc Bissonnette <dragnet\_@_/internalysis.com>
> > wrote:
> >>
> >> It's reassuring to hear a nerve reconnecting story - How long did it
> >> take for you ? I'm at 7 months now and still nothing on the right side
> >> of my face
> > I recently had basal cell remove from my forehead. I asked about
> > numbness and nerve regeneration. 6 Months? My MD raised an eyebrow
> > and said,........"mmmm 6 months. I would say a year or a year and a
> > half, maybe two. And there is the possibility it will not
> > regenerate."
> > Be like me, and plan on the 1 - 2 years and it will be working! And
> > have patience. After all you have been though, this is not huge in
> > the scheme of things. God bless.
> >
>
> Hey thanks for that. Seven months an still nothing is frustrating, but it's
> nice to know it might not be forever.

Mine was wide and deep and has never recovered. No graft since there's no
functional nor esthetic problem.

Here's what wikipedia has to say about grafts
http://en.wikipedia.org/wiki/Nerve_regeneration
Autologous Nerve Grafting

Currently, autologous nerve grafting or a nerve autograft is known as the gold
standard for clinical treatments used to repair large lesion gaps in the
peripheral nervous system Nerve segments are taken from another part of the
body the donor site and inserted into the lesion to provide endoneurial tubes
for axonal regeneration across the gap
However this is not a perfect treatment often the final outcome is only limited
function recovery
Also partial deinnervation is frequently experienced at the donor site and
multiple surgeries are required to harvest the tissue and implant it

J

On Jul 20, 6:04*pm, Figgertoes <agent01...@my-deja.com> wrote:
> Marc Bissonnette <dragnet\_@_/internalysis.com> wrote innews:Xns9AE18E19F5D51dragnetinternalysisc@216.19 6.97.131:
>
>
>
> > sheder1 <turtletr...@bellsouth.net> fell face-first on the keyboard.
> > This was the result: news:1e33ba33-2cb1-4d0e-ba35-0f4fdf791a63
> > @j22g2000hsf.googlegroups.com:
>
> >> On Jul 19, 1:43*pm, Marc Bissonnette <dragnet\_@_/internalysis.com>
> >> wrote:
>
> >>> It's reassuring to hear a nerve reconnecting story - How long did it
> >>> take for you ? I'm at 7 months now and still nothing on the right
> >>> side of my face
> >> *I recently had basal cell remove from my forehead. *I asked about
> >> numbness and nerve regeneration. *6 Months? * My MD raised an eyebrow
> >> and said,........"mmmm 6 months. *I would say a year or a year and a
> >> half, maybe two. *And there is the possibility it will not
> >> regenerate."
> >> Be like me, and plan on the 1 - 2 years and it will be working! * And
> >> have patience. *After all you have been though, this is not huge in
> >> the scheme of things. *God bless.
>
> > Hey thanks for that. Seven months an still nothing is frustrating, but
> > it's nice to know it might not be forever.
>
> I don't remember how long, Marc. *Mine was on a thigh & not so
> bothersome as yours, just a strange dead feeling. *I took a tai chi
> class & somehow that seemed to trigger the reconnection - with a
> vengence. *After each class, I would have brief but intensely painful
> episodes as feeling was restored. I don't know how the tai chi did that,
> but I am convinced it did. *
>
> Meanwhile, maybe they have Santa suits on sale in July?
>
> Fig

Tai Chi.....isn't it great !

sheder1 <turtletrot1@bellsouth.net> wrote in
news:134eaedc-3cae-47f5-84d2-3a6af403dbf5@s50g2000hsb.googlegroups.com:

> On Jul 20, 6:04*pm, Figgertoes <agent01...@my-deja.com> wrote:
>> Marc Bissonnette <dragnet\_@_/internalysis.com> wrote
>> innews:Xns9AE18E19F
> 5D51dragnetinternalysisc@216.196.97.131:
>>
>>
>>
>> > sheder1 <turtletr...@bellsouth.net> fell face-first on the
>> > keyboard. This was the result:
>> > news:1e33ba33-2cb1-4d0e-ba35-0f4fdf791a63
>> > @j22g2000hsf.googlegroups.com:
>>
>> >> On Jul 19, 1:43*pm, Marc Bissonnette
>> >> <dragnet\_@_/internalysis.com> wrote:
>>
>> >>> It's reassuring to hear a nerve reconnecting story - How long did
>> >>> it take for you ? I'm at 7 months now and still nothing on the
>> >>> right side of my face
>> >> *I recently had basal cell remove from my forehead. *I asked about
>> >> numbness and nerve regeneration. *6 Months? * My MD raised an eyeb
> row
>> >> and said,........"mmmm 6 months. *I would say a year or a year and
>> >> a half, maybe two. *And there is the possibility it will not
>> >> regenerate."
>> >> Be like me, and plan on the 1 - 2 years and it will be working! *
>> >> An
> d
>> >> have patience. *After all you have been though, this is not huge
>> >> in the scheme of things. *God bless.
>>
>> > Hey thanks for that. Seven months an still nothing is frustrating,
>> > but it's nice to know it might not be forever.
>>
>> I don't remember how long, Marc. *Mine was on a thigh & not so
>> bothersome as yours, just a strange dead feeling. *I took a tai chi
>> class & somehow that seemed to trigger the reconnection - with a
>> vengence. *After each class, I would have brief but intensely painful
>> episodes as feeling was restored. I don't know how the tai chi did
>> that, but I am convinced it did. *
>>
>> Meanwhile, maybe they have Santa suits on sale in July?
>>
>> Fig
>
> Tai Chi.....isn't it great !

I enjoyed my class, but I've not continued with it. It reminded me of
learning to cast (fishing) when I would think my body was in the correct
posture but the end of the line wound up in a tree behind me, obvioualy
NOT 1:00.

Do you do tai chi? There are groups in parks here - fun to watch.

Fig

On Jul 22, 1:47*am, Figgertoes <agent01...@my-deja.com> wrote:

>
> Do you do tai chi? There are groups in parks here - fun to watch.
>
> Fig
Yes, I do Tai Chi. It is helping, I think, in coping with the loss
of Franzi. I live over 1000 miles from family and life long friends.
Franzi and I were all for each other, and now that he is not here with
me, I am quite isolated. And I find myself becoming more and more of a
recluse. Depression, I think. Talking oneself out of it does not
seem to work! But, as I said, Tai Chi seems to be helping. (Cynic
that I am, I am still waiting to feel the energy flow from one hand to
the other!)

sheder1 <turtletrot1@bellsouth.net> wrote in news:5b60bd7f-85dc-4dbc-
a7a2-b7eda4d972df@c65g2000hsa.googlegroups.com:

> On Jul 22, 1:47*am, Figgertoes <agent01...@my-deja.com> wrote:
>
>>
>> Do you do tai chi? There are groups in parks here - fun to watch.
>>
>> Fig
> Yes, I do Tai Chi. It is helping, I think, in coping with the loss
> of Franzi. I live over 1000 miles from family and life long friends.
> Franzi and I were all for each other, and now that he is not here with
> me, I am quite isolated. And I find myself becoming more and more of a
> recluse. Depression, I think. Talking oneself out of it does not
> seem to work! But, as I said, Tai Chi seems to be helping. (Cynic
> that I am, I am still waiting to feel the energy flow from one hand to
> the other!)
>
Turtletrot,

I do not know what is keeping you 1000 miles from family & life long
friends, but I urge you to give moving some serious thought.

Earlier this year, I helped move Sock's 80 year old aunt from Florida,
where she had lived for 35 years (due to her deceased husband's medical
condition) back to Long Island & her family & life long friends. It was
a good move for her. She wanted to be close to her family so much that
she risked quite a bit & still has not sold her mobile home in Florida.
A nice apartment became available in a retirement community & she just
packed up.

Last weekend, I became concerned when I could not reach her from early
morning until late afternoon. Finally tracked her down at one of her
friend's house where she had been playing cards all day - & won all 3
games she bragged! Move did her good. She is beginning to have some
difficulty managing her affairs, & now she has sons & other relatives
close by.

I don't know your situation, but isolation & depression are not good.
Tai Chi is great, but it cannot replace the companionship you are
missing.

Please think about it & if you already have, think some more.

Fig