Charlie,
You're amazing. Your courage and resolve are really inspiring. I hope the
mouthwash helps and that you continue to be able to manage the side effects
with the upcoming treatments. Don't ever be self-conscious about "whining"
here...this is a great place to whine, as a matter of fact...
You're in our thoughts and prayers always....
Torie
>
> I'm making myself stay ambitious for a short time after having played
the Sunday Brunch at The Warwick today in order to give everyone a brief
update. Obviously, I'm still working, that's pretty good news, although I
think if I had to go more than 4 hours or so it would be time for me to bail
out.
>
> Side effects of the radiation continue to compound and worsen as
promised; I can no longer speak comfortably at all, swallowing is
excruciating (even water), muscle aches in the back and shoulders, and
general fatigue. Because my tumor is in the neck, mouth pain is the main
problem, particularly the blistered underside of my tongue. Well, that's
enough whining (although I must admit I feel better to have bitched at
everyone a little bit). The good news is, there's no new bad news. No
unforeseen complications have developed, the tumor is shrinking, I'm
managing to maintain my weight (which takes some true grit), and the
low-grade fever I was experiencing has disappeared. I'm still able to
mentally focus for long enough periods of time to be able to play music, a
game of cards, write this letter, etc. So despite all my complaints, I'm
sure things could be much worse.
>
> You're a heck of a support system out there; I've seen almost all of
you who receive this who live in the Houston area in the last three weeks,
and I hear from the rest of you via email and phone. This means more to
Sally and I than you will ever know.
>
> Speaking of Sally, she appears to be none the worse for all the wear;
she's been going at it 24 hours a day, but I can't deny that she seems up to
the challenge. I would like for all of you to encourage her to try to make
some time for personal interests, important ones as well as those that may
seem trivial.
>
> I'm going to keep this brief, in order to get some rest before
tomorrow, a long day at M D Anderson during which my blood will be
re-evaluated, a new mask made, a new sim planning session will take place,
in order to pinpoint the radiation to the areas which have been altered by
the previous treatments, AND a regular dose of radiation. Two more weeks of
that, then the combine chemo + radiation begins.
>
> I honestly can't say when I'll write again; I try to every so often
just so everyone knows I'm capable of it, however, the need for rest seems
to grow and grow, and frankly the pain is beginning to be a major
distraction. I was prescribed a mouthwash today that will "numb" the area
for 30 minutes or so, allowing me to slip down some Sustecal; its only
partially effective. I guess there's only so far you can go to inhibit
mouth pain. I can actually see the wound, and it's a doozie. Saliva has
thickend up so much that I have to use a kleenex to remove it from my mouth,
and sometimes when I do that, some tongue tissue comes along with it. The
reason I'm saying all this is: I feel like I'm being supplied with every
possible option for pain control, it's just that this is going to be hard to
combat.
>
> Thank you all for your continued concern.
>
> Charlie T
> Really Live Music
> charliet@flash.net
> Enter The T Zone at www.flash.net/~charliet
><!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
><HTML>
><HEAD>
>
><META content=text/html;charset=iso-8859-1
http-equiv=Content-Type><!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
><META content='"MSHTML 4.71.2110.0"' name=GENERATOR>
></HEAD>
><BODY bgColor=#ffffff>
><DIV><STRONG><FONT size=2>I just read your other post (update) and Lordy I
don't
>know how your doing it, playing, singing with a mouth like your's! I
can't
>figure if your music keeps you going and that is why, or your the bravest
man in
>the world. In any event I admire you. Sally, Charlie is right, you
>must take some time out for yourself, meet a friend for lunch, or just do
>something stupid, I took care of my mother and then her sister and I loved
them
>dearly as you do Charlie; but the patient worries about their caregivers
and it
>makes them feel good if you do something for yourself. Bless you
>both. Lillian</FONT></STRONG></DIV>
><BLOCKQUOTE
>style="BORDER-LEFT: #000000 solid 2px; MARGIN-LEFT: 5px; PADDING-LEFT: 5px">
> <DIV><FONT face=Arial size=2><B>-----Original Message-----</B><BR><B>From:
> </B>Charlie T <<A
> href="mailto:charliet@flash.net">charliet@flash.net</A>><BR><B>To:
> </B>Nancy Pulling <<A
> href="mailto:Npulling@gibbs-soell.com">Npulling@gibbs-soell.com</A>>;
> Jane Rolling <<A
> href="mailto:jrolling@monroelemann.com">jrolling@monroelemann.com</A>>;
> Debbie Kutz <<A
> href="mailto:euchkutz@tcbi.com">euchkutz@tcbi.com</A>>; Boo Middleton
> <<A href="mailto:Caraland@aol.com">Caraland@aol.com</A>>; Chaya
> Tinterow <<A
> href="mailto:tinterow@ix.netcom.com">tinterow@ix.netcom.com</A>>; Chuck
> Bollinger <<A href="mailto:cb0664@idt.net">cb0664@idt.net</A>>;
Howard
> Hoffmaster <<A
href="mailto:hoffmst@webtv.net">hoffmst@webtv.net</A>>;
> John Sandstrom <<A
> href="mailto:JSand713@aol.com">JSand713@aol.com</A>>; MOL Mailing List
> <<A
> href="mailto:mol-cancer@lists.meds.com">mol-cancer@lists.meds.com</A>>;
> Rick Holly <<A
>
href="mailto:Muleheaded.comm@Worldnet.att.net">Muleheaded.comm@Worldnet.att.
net</A>>;
> Rob and Carol Talley <<A
> href="mailto:RWTalleyJR@aol.com">RWTalleyJR@aol.com</A>>; Ronnie David
> <<A
href="mailto:RonDav88@ix.netcom.com">RonDav88@ix.netcom.com</A>>;
> Scott Brockett <<A
>
href="mailto:Scott_Brockett%MMI@notes.interliant.com">Scott_Brockett%MMI@not
es.interliant.com</A>>;
> Susana Riddle <<A
> href="mailto:SRiddle166@aol.com">SRiddle166@aol.com</A>>; Ted Tilson
> <<A href="mailto:bevted@aol.com">bevted@aol.com</A>>; Titou
Middleton
> <<A
> href="mailto:Twotwobird@aol.com">Twotwobird@aol.com</A>><BR><B>Date:
> </B>Sunday, February 01, 1998 5:11 PM<BR><B>Subject: </B>[MOL]
Beginning of
> week 4<BR><BR></DIV></FONT>
> <DIV><FONT color=#000000 size=2>I'm making myself stay ambitious for a
short
> time after having played the Sunday Brunch at The Warwick today in
order to
> give everyone a brief update. Obviously, I'm still working, that's
> pretty good news, although I think if I had to go more than 4 hours or
so it
> would be time for me to bail out.</FONT></DIV>
> <DIV><FONT color=#000000 size=2></FONT> </DIV>
> <DIV><FONT color=#000000 size=2>Side effects of the radiation continue to
> compound and worsen as promised; I can no longer speak comfortably at all,
> swallowing is excruciating (even water), muscle aches in the back and
> shoulders, and general fatigue. Because my tumor is in the neck,
mouth
> pain is the main problem, particularly the blistered underside of my
> tongue. Well, that's enough whining (although I must admit I feel
> better to have bitched at everyone a little bit). The good news is,
> there's no new bad news. No unforeseen complications have developed,
> the tumor is shrinking, I'm managing to maintain my weight (which takes
some
> true grit), and the low-grade fever I was experiencing has
> disappeared. I'm still able to mentally focus for long enough
periods
> of time to be able to play music, a game of cards, write this letter,
> etc. So despite all my complaints, I'm sure things could be much
> worse.</FONT></DIV>
> <DIV><FONT color=#000000 size=2></FONT> </DIV>
> <DIV><FONT color=#000000 size=2>You're a heck of a support system out
there;
> I've seen almost all of you who receive this who live in the Houston
area in
> the last three weeks, and I hear from the rest of you via email and
> phone. This means more to Sally and I than you will ever know.
> </FONT></DIV>
> <DIV><FONT color=#000000 size=2></FONT> </DIV>
> <DIV><FONT color=#000000 size=2>Speaking of Sally, she appears to be none
> the worse for all the wear; she's been going at it 24 hours a day, but I
> can't deny that she seems up to the challenge. I would like for
all of
> you to encourage her to try to make some time for personal interests,
> important ones as well as those that may seem trivial. </FONT></DIV>
> <DIV><FONT color=#000000 size=2></FONT> </DIV>
> <DIV><FONT color=#000000 size=2>I'm going to keep this brief, in order to
> get some rest before tomorrow, a long day at M D Anderson during which my
> blood will be re-evaluated, a new mask made, a new sim planning session
will
> take place, in order to pinpoint the radiation to the areas which have
been
> altered by the previous treatments, AND a regular dose of radiation.
> Two more weeks of that, then the combine chemo + radiation
> begins. </FONT></DIV>
> <DIV><FONT color=#000000 size=2></FONT> </DIV>
> <DIV><FONT color=#000000 size=2>I honestly can't say when I'll write
again;
> I try to every so often just so everyone knows I'm capable of it, however,
> the need for rest seems to grow and grow, and frankly the pain is
beginning
> to be a major distraction. I was prescribed a mouthwash today that
> will "numb" the area for 30 minutes or so, allowing me to slip
> down some Sustecal; its only partially effective. I guess there's
only
> so far you can go to inhibit mouth pain. I can actually see
the
> wound, and it's a doozie. Saliva has thickend up so much that I have
> to use a kleenex to remove it from my mouth, and sometimes when I do that,
> some tongue tissue comes along with it. The reason I'm saying all
this
> is: I feel like I'm being supplied with every possible option for
pain
> control, it's just that this is going to be hard to combat.</FONT></DIV>
> <DIV><FONT color=#000000 size=2></FONT> </DIV>
> <DIV><FONT color=#000000 size=2>Thank you all for your continued
> concern.</FONT></DIV>
> <DIV><FONT color=#000000 size=2></FONT> </DIV>
> <DIV><FONT color=#000000 size=2>Charlie T<BR>Really Live Music<BR><A
> href="mailto:charliet@flash.net">charliet@flash.net</A><BR>Enter The T
Zone
> at <A
>
href="http://www.flash.net/~charliet">www.flash.net/~charliet</A></FONT></DI
V></BLOCKQUOTE></BODY></HTML>
>
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