Hey guys, I've missed you...

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February
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Re: Hey guys, I've missed you...

Post by February » Sat Aug 30, 2008 10:32 pm

No news we are waiting for PET Scan results...though they are talking about starting radiation before they go for the last resort of removing everything, voice box, etc...thing is if it's spread, then the decisions will be different.

I wish they'd give us the damn results already it's driving me crazy not knowing what we're really dealing with here.

Will keep you guys posted, thanks again for all the hugs and support.

xoxo
Bru



Two things stand like stone:
Kindness in another’s trouble.
Courage in your own.
~Adam Lindsay Gordon

"...and only fireworks will light the sky at night
for all the world can see." ~Keane

Princess Susi
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Re: Hey guys, I've missed you...

Post by Princess Susi » Sat Aug 30, 2008 11:14 pm

Continued hugs and prayers coming your way, Bru! Just rest up and take it easy on yourself. Get enough sleep and eat right. That will help you keep strong.
Much Love,
Susi


[SIGPIC][/SIGPIC] Hugging a Beluga is swell!

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Re: Hey guys, I've missed you...

Post by GRUMPY PIRATE » Sat Aug 30, 2008 11:26 pm

Princess Susi wrote:Continued hugs and prayers coming your way, Bru! Just rest up and take it easy on yourself. Get enough sleep and eat right. That will help you keep strong.
Much Love,
Susi
YEs all that...


and sneak a shot 'O RUM!!!


:pirateflaARRRRRRR YA DOIN'?

February
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Re: Hey guys, I've missed you...

Post by February » Sun Sep 07, 2008 12:18 pm

OMG you guys, it is the week that has been a year long.

So much going on.

First- I got a phone call last Sunday morning from my dad's attending at the U. He asked my dad who he could speak to in the family besides mom, and Dad asked him to call me.

This set into motion a whole bunch of events- including my being told that the staff at the hospital was "dumbfounded' by my mother's behavior and that they could easily tell she is at least massively bi-polar and that they 'observed her personality splitting right in front of them'.

I told them this was nothing I didn't already know- that help has been refused all of my life and this is what I've lived with.

Long story short- Dad asked me to become his DPOA- and wouldn't leave the hospital until the paperwork was signed and witnessed. All of my siblings have entirely checked out of the situation and I ended up taking a hired car to the hospital last Tuesday to deal with the doctors, social workers, legal matters, etc before putting Dad and all seven bags of his trach care supplies and all into another taxi and bringing him home- by myself. My husband had to be at work that day and he had to save up taking a day off for the NEXT day when we had to turn around, bundle dad up and take him BACK to the hospital for important Rad/oncology and ENT surgery appointments.

I was so ticked that they wouldn't keep him one more night so we didn't have to drag him in and out and back and forth (it's not like the hospital is next door) in the 90 degree heat and humidity but no such luck.

First thing mom did when we got in the door was start screaming at me about the taxi I brought him home in! I said "Mother, if you're not going to do this, you don't get to critisize how I do this! PERIOD!" Told my brother off too when he started picking on me I said you don't get to have a say if you're not helping.

Hubby and I took Dad back Wednesday- we were there all day and this is the final on the tests: the cancer is considered stage 2, but the tumor itself is a T4 sub-glottal squamous cell carcinoma. Bad as it can be- and extremely rare in someone who has never smoked and has no family that smokes! BTW if you smoke, quit NOW. You do not ever want to deal with something this bad.

He's got total airway obstruction now (without the trach he'd be dead) and they are talking about two potential courses to recommend- either chemoradiation or surgery with follow up radiation.

Tomorrow their big board meets to decide. Honestly, I do not think the man could survive seven weeks of radiation- 35 treatments at 20 minutes apiece plus chemo. He's too frail. Yet, he was ready to sign up for it- his thinking is not straight though he always told me for years he would never want chemo for any reason and when he filled out the paperwork at the doctors the other day, more than half the answers were wrong and I had to correct them (recent problems, etc).

I loved his doctors and they were happy to meet me after dealing with my mother- one asked me if I was in the medical profession as I was asking my questions (so I didn't sound too stupid! Research pays off) and the ENT surgeon said he'd been hearing great things about me from the staff- which was a relief since I had been doing major post Mom damage control for days.

So tomorrow they meet- they call me, and we go forward. If he wants to go the chemoradiation route we will have to move him into an assisted care facility of some kind because there is no way I can take care of him with my health problems and no one else who is able is willing.

Honestly, I think the surgery- even though I don't like the idea of the laryngectomy, is the best solution in a horrible situation. He put off going in for so long- if they can give him a surgical cure then it may be the best shot we've got.

They have to take into account too his refusal of blood products because he won't even take Procrit to drive up his blood count (he's already anemic) so if they want to try to do surgery later if chemo and all fails- he won't be in any shape for it.

Keep good thoughts for us please...time has slowed and will stay stuck until they call me (either tomorrow or Tuesday). Wish us well...

love and hugs to all
Bru



Two things stand like stone:
Kindness in another’s trouble.
Courage in your own.
~Adam Lindsay Gordon

"...and only fireworks will light the sky at night
for all the world can see." ~Keane

February
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Re: Hey guys, I've missed you...

Post by February » Sun Sep 07, 2008 12:25 pm

Oh I forgot to add, the thing about the chemoradiation is they don't know for sure it'll get rid of the cancer- or leave his voicebox at all useful which is the only reason for avoiding the surgery to begin with.

They know he won't be able to talk (chemo would destroy that) but eating/breathing and not having to have a permanent trach/stoma would be the goal here. Only thing is, if the man can't eat, the man won't want to live. My father loves food- after routinely going hungry as a child, I can't think of anything that would be crueler in his declining years than to not be able to eat. He would hate living with a feeding tube and I am certain that he would become so depressed that the rest of his health would tank (what's left of it) this is why, while I await the doctor's final recommendation and my father's decision- I believe that since he waited SO long to seek treatment, that the laryngectomy is the way to go. He will have to live with the stoma but he'll be able to breathe, eat, and the cancer will, they say, be gone.

At this late point in the game, I don't think we can ask for more than that.

Bru

PS Sus, love the Fred and Ginger. Love, love love it. When I was two I used to sing "Let's call the whole thing off" cause I was so used to watching all of those movies. I loves me some Gene Kelley too- Brigadoon being my favorite...



Two things stand like stone:
Kindness in another’s trouble.
Courage in your own.
~Adam Lindsay Gordon

"...and only fireworks will light the sky at night
for all the world can see." ~Keane

Big Wallaby
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Re: Hey guys, I've missed you...

Post by Big Wallaby » Sun Sep 07, 2008 8:28 pm

Wow. I had thought there was no hope. To hear the doctors say they at least want to try treatment, even surgery that could completely remove the cancer, is as close as you can get to wonderful news. I hope they decide to give it a go and that it works.

Good for you, telling your mom and brother that if they won't help, they don't get a say, just as if you don't vote you can't complain about who becomes President.

Keep us posted!



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Re: Hey guys, I've missed you...

Post by DisneyMom » Sun Sep 07, 2008 10:07 pm

Wow again.
I am so sorry all this is on your shoulders, Bru. :(
I Guess God gave you to your Father so he'd have a ray of light in all this mess.
You are showing incredible strength, and I'm glad you are so knowledgable.
I hope whatever you and your Dad decide, he will be as comfortable as possible and you and he will get some more good times together(despite it all).


:flybongo: NO BULL!!!!!:D:

GaTechGal
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Re: Hey guys, I've missed you...

Post by GaTechGal » Mon Sep 08, 2008 8:40 am

Hope you all get some good news today Bru. Sounds like you have a good handle on it. More prayers coming your way. Keep your chin up gal.



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Re: Hey guys, I've missed you...

Post by Mayonnaise » Mon Sep 08, 2008 10:03 am

It's good to hear about your father granting you DPOA. It seems at least he recognizes that you are out for his best interest.

*Hugs.*

8^)



Princess Susi
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Re: Hey guys, I've missed you...

Post by Princess Susi » Mon Sep 08, 2008 11:17 am

Bru,
Your continuing strenth is amazing and inspiring. You have taken on so much and with what you have to deal with on a daily basis for yourself, you are an amazing woman. Just remember, God never gives us more than we can handle. He knows you are the strong and smart one in your family, the one who will be able to handle it. Just be sure to eat well and sleep enough and take care of yourself.

Sounds to me that surgery would be the best bet for dad. That would keep him from getting so sick from the chemo and it would be a quick treatment and probably most successful. I continue to pray for your dad to see what is best for him and that you are his saving angel.

"You say tomato" ;) ...

http://www.youtube.com/watch?v=s0ce1agpBVM

Keep on singing... ;) I do everyday, mostly "Day and Night". Tho my faves are "Just The Way You Look Tonight" and "They Can't Take That Away From Me"! Glad we share a love of Fred and Ginger. They somehow can bring a smile when things are looking down.

Gotta love Gene Kelly as well. What talent! They don't make em like they use ta! There is a great video that Fred and Gene did together in Ziegfeld Follies called "The Babbit and the Bromide". It is terrific:

http://www.youtube.com/watch?v=asI_U4CL1lg

Singing and music are very healing to the soul...


[SIGPIC][/SIGPIC] Hugging a Beluga is swell!

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