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Hiedi's picture
Hiedi
Posts: 19
Joined: Oct 2009

Good morning or evening depending on where you are.
Looking for someone to talk to/with.
I'm still trying to navigate this sight and read a bit, and feeling very overwhelmed.

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

Hi Hiedi,

My name is Kurt and I recently has been diagnosed with SCC of the base of tongue and has spread to the neck. Just had my PET scan and showed it has not spread anywhere else. Next week I have a out patient surgery to scope my throat and put in my feeding tube. Looks like treatment will begin the first of nov. If there is anything I can share I will ggladly do what I can.

Kurt

Hiedi's picture
Hiedi
Posts: 19
Joined: Oct 2009

Thank you Kurt I greatly appreciate it.
By the way that picture is adorable!

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

They are my 15 month twin boys. John and Owen. A big reason to be positive while going through this.

Hiedi's picture
Hiedi
Posts: 19
Joined: Oct 2009

Congratulations! (since i couldn't do it 15 months ago) lol
I use humor to get me through this although sometimes its lacking.

Hiedi's picture
Hiedi
Posts: 19
Joined: Oct 2009

BTW-I get your screen name now,
I was thinking you were a "football" fan.
(sorry I couldn't resist)

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

Yes I believe humor is the best medicine. So where are you in your treatment.

Hiedi's picture
Hiedi
Posts: 19
Joined: Oct 2009

I guess you can say the back end of treatment, I'm passed the surgery,
and radiation stage. And still in physical therapy to reuse the muscles
in my shoulder, face and neck. I thought I could make goofy faces before
but this damaged facial nerve is a trip.

Hiedi's picture
Hiedi
Posts: 19
Joined: Oct 2009

Are you frightened?
I go for my 6mnth. check up Monday and
I'm beside myself with nerves. I know to
be positive, but when I am thats
when you're hit with the opposite news you're
expecting.

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

LOL Well your lucky the worst is pretty much behind you. I am in the waiting mode. Hard to wait 3 weeks before they will start treatment. The plan now is no surgery and do chemo and radiation. I don't know if this will change after they do the scope of my throat wednesday. I am in Atlanta going to Emory University Cancer Clinic. They are suppose to be good. We will see. LOL. And thank you for the congrats and funny on the OJ comment. Right now sleeping and eating are the hardest part. Everyone says eat as much as you can but don't have much of an appetite. I am eating but is tough. I feel better after the PET scan and knowing it has not spread further.

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

Yes I am frightened but it is more of what lays ahead. I have read a lot of what to expect but I guess until you go through it you never know. I am thinking about you and hope your scan comes back great.

Hiedi's picture
Hiedi
Posts: 19
Joined: Oct 2009

I do suppose that was bit of a ridiculous question to ask. I guess I needed to hear at that moment that I wasn't alone. Although deep inside I know I'm not. And someone else always has it worse off than I do. I thank you, for everything, especially your friendly company at this time. And know that I am hear for you if need be.

Hiedi's picture
Hiedi
Posts: 19
Joined: Oct 2009

Thanks, i don't even try sometimes it just pops in there and I have to write it.
(sometimes gets me into trouble) but that's another story :)

I can relate on the loss of appetite. I too experienced that. I think it
was mostly stress oriented though. Believe me, what I lost in weight I definitely
recovered when I was able to eat normal food again. I even may have over
compensated. (forgot how good things tasted.

The sleeping thing is driving me BONKERS!!!!!! Ever since my diagnosis in Feb 09, I can't sleep worth a crap!!! It's horrible!!!!

Not spreading is always good news to hear. I suppose that it was I'm looking
forward to hearing Monday.

I'm located in Ohio, so I'm not too familiar (if at all) with EUCC, Up here I'm not
far from the Cleveland Clinic so it looks like we are both in good hands respectively.

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

LOL yeah sometimes I think my brain is not connected to my mouth. The worse for me rigth now is waking up. that moment you wake up and then suddenly you realize O yeah...I have cancer. Like be told again every day. That and everyone you have to be positive. I know I have to but you still have to think ...what if. People don't get thhat.

Hiedi's picture
Hiedi
Posts: 19
Joined: Oct 2009

Oh yeah!! Guilty here!! (brain to mouth connectivity)

That moment is awful isn't it, and 9 out of 10 times that is when you are the most alone,
everyone is asleep and everything is dead quite. Except you and the thoughts.
(EWE I'm prolly not helping)

Being positive is also exhausting too. Especially when you're forcing it
or trying to find it. I'd be better off with a 500 year old treasure map, and
an undisclosed location sometimes. LOL

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

Not depressing at all. Refreshing the honesty. Yes being up for everyone is tough. I have found the pity parties to be helpful. Just be alone and let it out for a few minutes. Are you married.

Hiedi's picture
Hiedi
Posts: 19
Joined: Oct 2009

I've had my fair share of pity parties, and you're absolutely right, letting
it out helps. I'm engaged to a wonderful, beautiful, woman. (yes you read that right)
But I doubt we will ever be "legally" married.

I'm assuming you are married?! If so how long? How is she coping?

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

Been married 8 years and she is amazing. Very strong and supportive. It is tough because we have yet to really share are fears. Just being strong for each other. LOL yep did read it twice...was thinking Heidi is an unusual name for a guy. LOL. Well I can honestly say I am 100 percent for gay rights. and believe it or not I vote repulican. LOL...simply repulican for economic reasons. If somebody loves somebody who should say that they should not be together or get married. Don't understand hate for love. Most important I am glad you have someone to lean on while going through this.

Hiedi's picture
Hiedi
Posts: 19
Joined: Oct 2009

LMAO!
(I'm actually republican can you believe it?!)Economical reasons as well, and believe
it or not I'm a conservative person too. Oh well, guess God broke a mold or two with me, and still dropping them obviously) hehehe

It's good to see several years behind a marriage nowadays, Koodo's to you and your wife.
The talks will come, there is always a time and place. Being strong and there for each other
is all you can do (plus the honesty).

I wish my finance had someone to talk to and lean on for support, I don't know how she did it. I don't know where I would be if it wasn't for her. But regardless I'm blessed and it seems that you are too.

P.s. I like your views feel like running for office? :)

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

LOL well as long as you are on the ticket with me. You need to have her long on here. The are people on here who are family members friends and spouses who are on here. I have to and try and sleep. Kids get up at 7. I have really enjoyed. Good to laugh hope to do it again soon. will be thinking about you Monday.

PS Glad he broke the mold.

Hiedi's picture
Hiedi
Posts: 19
Joined: Oct 2009

It was an absolute pleasure Kurt!!! And thank you as well you've really helped me this evening as well! And I'm sure there will be more laughs to come, especially if I have anything to do with it.
Try and get some good rest, my prayers are with you.

Thanx!! your not too shabby yourself!!

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

Hope u had a great day.

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

my boyfriend is going thru treatment, and i take something for sleep!! It works for me, but you should check it to make sure there isnt anything you shouldnt have.
I am taking a natural remedy that was recommended by my Chiro/nutritionist called
Sedalin manufactured by a company named Xymogen. The label says it has no artificial sweeteners, i just saw with my reading glasses! lol!

http://www.xymogen.com/uploads/attributes/sedalin-0906.pdf

it works the best on me of anything. Better than ambien. So maybe this is will be good for you, but check with the dr about the ingredients ok?
you have to take it steady for 7 days to have it in your system before it starts to really have a good effect, but everyone is different, i noticed right away. Kind of costly at $38
for 60.

thegirlfriend

Hiedi's picture
Hiedi
Posts: 19
Joined: Oct 2009

I will try anything, but will definitely check with my dr first.
Thank You for the input it's greatly appreciated!

ratface's picture
ratface
Posts: 1229
Joined: Aug 2009

So I'm sure all that have read the post are waiting for you to post the good news, let us know?

Hiedi's picture
Hiedi
Posts: 19
Joined: Oct 2009

I haven't heard anything yet...So I'm assuming no news is good news...
(fingers crossed)

ratface's picture
ratface
Posts: 1229
Joined: Aug 2009

Crossing fingers and toes.

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