Call on Congress - States coming so far

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eitter
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Call on Congress - States coming so far

Postby eitter » Mon Jan 23, 2012 12:18 pm

Below is a list of states that HAVE Advocates coming, right now only 20 states are covered and since I have been going I think we have barely ever gone over half.

Ok so Breast Cancer stats for death are down and diagnosis is up and early diagnosis is up because of their legislation they had passed and getting the word out. The legislation we have been trying to get passed is modeled after the very successful breast and cervical cancer screening program. What they did is drop in the word ColoRectal Cancer where it said Breast and Cervical and it is pretty much word for word the same and their was passed 10+ years ago!

But we can't get it through unless we have all states covered with advocates, face to face is the best! There is a "Butt In", yes pun intended! And you can call if you cannot come, but we need bodies there! If you can't go due to treatments, maybe a spouse can go or a friend or family! Friends come in fact Mandi comes every year now after her best friend passed Christine Niemi and she is a BIG voice! Breast cancer storms DC with EVERY state covered and we need to do the same!

Also please keep in mind each state has Congressional districts, so if there is already someone from your state still please come then we can get all the districts covered! How it works when we go talk to the congressmen all the state reps go as a group to see the Senators since they covere the whole state, then each person goes to visit their districts Rep and do not worry if you are nervous a mentor can go with you!

Home State #Advocates

AL 1
AZ 1
CA 4
CO 1
FL 1
GA 1
KS 1
MA 1
MI 1
NC 1
NJ 4
NY 1
OH 1
OR 4
PA 4
SC 1
TX 1
VA 9
WV 1
WY 2

Please come Join Us!!!
Blessings,
Liz DENNIS
Tempe,AZ
DX 05/06 Rectal
6 Weeks radiation with 5FU
LAR 10/06 Stage III
Temp Ileo, reversal failed in 05/07 after 1m in hospital came out with a permanent colostomy
http://www.runlizrun.com

NWgirl
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Re: Call on Congress - States coming so far

Postby NWgirl » Sun Jan 29, 2012 12:19 pm

I talked to my husband about this this morning. As it turns out, he has a board meeting in D.C. on March 7th.....is this destiny or what? I've really waffled on whether to attend this event or not as I'm not crazy about traveling alone these days, what to do with the kids if I don't bring them, etc. I think now we're going to combine his business trip and this event into a family vacation that I've always wanted to do anyway - we're going to D.C.

I still need to make all the necessary reservations, registrations, but I think it's safe to say - add Washington State to your list - woohoo!
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

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Gaelen
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Re: Call on Congress - States coming so far

Postby Gaelen » Sun Jan 29, 2012 12:38 pm

That's terrific - remember to get registered for the actual event by Feb 5!
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment

NWgirl
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Re: Call on Congress - States coming so far

Postby NWgirl » Sun Jan 29, 2012 3:04 pm

Yes, I'm cutting it a little close here! I'm just checking to see if I need to register my kids or not. Do you think you'll be able to make it Gaelen? Anyone else from The Colon Club who will be there?
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

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Gaelen
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Re: Call on Congress - States coming so far

Postby Gaelen » Sun Jan 29, 2012 3:39 pm

As far as I know, you should only need to register your kids for the nanquet (Wednesday night) and if you plan to bring them with you up to the hill (which might be a great civics lesson, depending on their ages.)

Yes, I plan to be there.
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment

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eitter
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Re: Call on Congress - States coming so far

Postby eitter » Sun Jan 29, 2012 5:52 pm

Remember Belle what I told you it maybe cheaper to register them for the conference then what the banquet will cost. Email them ask.
Blessings,
Liz DENNIS
Tempe,AZ
DX 05/06 Rectal
6 Weeks radiation with 5FU
LAR 10/06 Stage III
Temp Ileo, reversal failed in 05/07 after 1m in hospital came out with a permanent colostomy
http://www.runlizrun.com

NWgirl
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Re: Call on Congress - States coming so far

Postby NWgirl » Sun Jan 29, 2012 8:43 pm

Thanks Pat and Liz. I've e-mailed Carla (who is on vacation at the moment - referred me to another gal who I've e-mailed). My kids are 9 and 11 and I'm bringing them. Carla suggested they do something else during the "training" day - so they'll either go do stuff with Dad or I'll have Carla put them to work (which they would probably love!). I'm taking with me to the actual "meet your congress person". We'll probably pass on the celebration dinner - at $100 per head that's a bit much for our family of 4 - especially when all the kids really want are chicken nuggets and cheeseburgers - lol! I've e-mailed the person Carla referred me to - so I just have a few logistical questions to sort out and then I'll register - I promise not to miss the deadline!
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

lydia123
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Re: Call on Congress - States coming so far

Postby lydia123 » Mon Jan 30, 2012 9:18 am

My husband and I will be attending, although sleeping at home.

I hope to meet some of you!

We had a great time last year. It was very empowering for me to see people taking their cancer-and-the-surrounding-crap and turning some of that energy outward toward the wider community. I highly recommend.

(PM me if you are driving in and unsure what to do with your car.)
lydia123
caregiver to husband dx stage III colon/rectal cancer 5/10
6/10 surgery
7/10: FOLFOX began -- became nausea management expert
12/10: Chemo-radiation ended, scans clean.
NED since, but some scans required follow-up

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eitter
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Re: Call on Congress - States coming so far

Postby eitter » Mon Jan 30, 2012 6:41 pm

NWgirl wrote:Thanks Pat and Liz. I've e-mailed Carla (who is on vacation at the moment - referred me to another gal who I've e-mailed). My kids are 9 and 11 and I'm bringing them. Carla suggested they do something else during the "training" day - so they'll either go do stuff with Dad or I'll have Carla put them to work (which they would probably love!). I'm taking with me to the actual "meet your congress person". We'll probably pass on the celebration dinner - at $100 per head that's a bit much for our family of 4 - especially when all the kids really want are chicken nuggets and cheeseburgers - lol! I've e-mailed the person Carla referred me to - so I just have a few logistical questions to sort out and then I'll register - I promise not to miss the deadline!


Belle the banquet is INCLUDED in the registration price and you have to come it is a great time to hear all the stories etc. That is why I said register the kids at $40 which includes dinner Wednesday!
Blessings,
Liz DENNIS
Tempe,AZ
DX 05/06 Rectal
6 Weeks radiation with 5FU
LAR 10/06 Stage III
Temp Ileo, reversal failed in 05/07 after 1m in hospital came out with a permanent colostomy
http://www.runlizrun.com

NWgirl
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Re: Call on Congress - States coming so far

Postby NWgirl » Wed Feb 01, 2012 9:49 am

Thanks for the clarification Liz - I'm registering us today! See you, Pat and hopefully others from the CC in D.C.!
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

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Kathryn in MN
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Re: Call on Congress - States coming so far

Postby Kathryn in MN » Wed Feb 01, 2012 2:40 pm

I'm hoping to add MN to the list of those represented. Healthwise I can finally attend! Financially it is a different story. I'm working on it right now, but not definite I'm going to be able to pull it off. I can cover registration and airfare, but the hotel is a huge problem. I am really surprised they chose such an expensive hotel when most of us are cancer patients with financial constraints.

I wish I had more time to work on fundraising - I just had a clear scan and had to wait for the scan to know if I'd be having treatment again or if I could go. Now I've got my stepmother's memorial service this weekend and a housefull of relatives coming to stay Friday through Sunday. Surgery yesterday to remove a failed port. I just need more time! I might just need to have faith and sign up, and then keep trying to pull the funding together.
CRC AUG09 Age 47
Sig Res T4a N2a Mx, KRAS mut codon13
Mets bones & nodes
FOLFOX, FOLFIRI, Avastin, Radiation
Irinotecan, Zaltrap & STAR RFA
APR13 pleurisy & ascites - more chemo & draining
http://www.caringbridge.org/visit/kathrynblume

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eitter
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Re: Call on Congress - States coming so far

Postby eitter » Wed Feb 01, 2012 2:58 pm

Kathryn in MN wrote:I'm hoping to add MN to the list of those represented. Healthwise I can finally attend! Financially it is a different story. I'm working on it right now, but not definite I'm going to be able to pull it off. I can cover registration and airfare, but the hotel is a huge problem. I am really surprised they chose such an expensive hotel when most of us are cancer patients with financial constraints.


I am So Sorry Kathryn! But Unfortunately DC is an expensive area of the US, have you been there before?! $193 is actually really good and normal rack rate for the hotel we are going to is $100 more per night, so I am surprised they got such a good rate. And surrounding area hotels are just as much if not more. You are MORE then welcome to find another hotel to stay at, I did not one year, but I did not pay any less I just did for hotel points!

I would offer my room but my mom is coming now and I am so excited she is coming!!!

Contact them and they may know of people looking for roomies! I sure do hope to see you there!

LIZ :)
Blessings,
Liz DENNIS
Tempe,AZ
DX 05/06 Rectal
6 Weeks radiation with 5FU
LAR 10/06 Stage III
Temp Ileo, reversal failed in 05/07 after 1m in hospital came out with a permanent colostomy
http://www.runlizrun.com

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Kathryn in MN
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Re: Call on Congress - States coming so far

Postby Kathryn in MN » Thu Feb 02, 2012 7:11 pm

I am going! I have a sponsor for registration. My grandmother sent $150 towards my hotel. I'm working on raising a little more towards hotel, and will probably stay at a hotel 1.5 miles away that is a block from the bus stop where I can grab a bus to the Marriott area.

I'm still working on my family - from IA and MO, and those states aren't represented yet either. They are all coming up for my stepmother's memorial service this weekend, so we'll talk about it the next two days, and then get them to commit one way or the other since the deadline is Sunday.
CRC AUG09 Age 47
Sig Res T4a N2a Mx, KRAS mut codon13
Mets bones & nodes
FOLFOX, FOLFIRI, Avastin, Radiation
Irinotecan, Zaltrap & STAR RFA
APR13 pleurisy & ascites - more chemo & draining
http://www.caringbridge.org/visit/kathrynblume

lydia123
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Joined: Sun Jul 04, 2010 11:23 am

Re: Call on Congress - States coming so far

Postby lydia123 » Thu Feb 02, 2012 10:36 pm

Woo hoo! I get to meet Kathryn!

Yeah, I know the hotel rate is high -- they all are around here, but I think they wanted to make sure it was on public transportation and not a big schlepp.
lydia123
caregiver to husband dx stage III colon/rectal cancer 5/10
6/10 surgery
7/10: FOLFOX began -- became nausea management expert
12/10: Chemo-radiation ended, scans clean.
NED since, but some scans required follow-up

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Kathryn in MN
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Re: Call on Congress - States coming so far

Postby Kathryn in MN » Thu Feb 02, 2012 10:41 pm

So we've got Pat, Liz, Belle, Lydia and I going from CC. I'm excited to have a chance to meet all of you!

Anyone else?
CRC AUG09 Age 47
Sig Res T4a N2a Mx, KRAS mut codon13
Mets bones & nodes
FOLFOX, FOLFIRI, Avastin, Radiation
Irinotecan, Zaltrap & STAR RFA
APR13 pleurisy & ascites - more chemo & draining
http://www.caringbridge.org/visit/kathrynblume


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