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  • in reply to: Good news and better news!!! #59960
    scragots
    Member

    Good morning! Here’s a follow up to our bowling fundraiser on April 14:

    We made $1046 through our First Giving page.
    http://www.firstgiving.com/fundraiser/susancrago/somethingforsue

    We received checks totaling $1350.

    I just wrote a check to the CC Foundation for $4331.11 for a grand total of:

    $6727.11

    My team was wonderful and we ended up with 141 bowlers and numerous people who just showed up to support us, including my doctor and her family!

    We hope to be able to make it an annual event.

    Thank you,
    Sue

    in reply to: Survival #60248
    scragots
    Member

    Sandie,

    I hit my 5 year cancer free anniversary on January 29 of 2012 and I am still going strong!!! Don’t let those statistics get you down. There are survivors!!!!

    hugs,
    Sue

    in reply to: Good news and better news!!! #59953
    scragots
    Member

    Thank you all for such great wishes!!! I feel great. No real health issues with my liver. I have to be careful with acetaminiphin (sp?) and can’t take ibuprofen (because of my kidneys) so I do live with pain but it has nothing to do with my liver. My bloodwork is all normal where my liver is concerned. I have no inflammation or liver pain, just a little discomfort which I figure must be scar tissue, and some acid reflux. My scans don’t seem to cause any questions to the docs and my doc has, in fact, released me! She said I was welcome to come back in a year, or two years, whatever I felt comfortable with. Dianne, feel free to ask me anything!

    Our fundraiser was a HUGE success!!! We had 141 bowlers and about 30 others who just dropped by to wish us well and to have a good time! And, boy, did we have a good time!!! We hoped to make $3000 for CC.org and came in around $6000!!!! That includes money from the First Giving Site, silent auction, 50/50 raffle and donations!

    I am amazed at the amount of support we have had and look forward to sending the Cholangiocarcinoma Foundation a check for over $4500! (Over $1500 has been donated via First Giving and sent directly to CC.org.)

    It was a great event and hopefully we will be able to do it again next year!

    Hugs,
    Sue

    in reply to: Bowling Fundraiser! #55351
    scragots
    Member

    Hello all!

    Plans are moving forward quickly!!! Now Nate (the other person helping on the fundraiser with Angie) has decided we need to get a big name in the bowling alley to play for us (besides our beloved Gypsy Revival) and he wants to just close down the alley and have it totally CCer’s!!! You would not believe how excited and amazed I am at how this is all coming together. We already have promises of basket donations, a couple more donations on the first giving page (http://www.firstgiving.com/fundraiser/susancrago/somethingforsue) and promised packages from the Indiana Ice and our local radio DJ’s Bob and Tom!!!

    Thanks to Gayle for asking for forms…they are already in the mail! If anyone else would like some, just let me know!!!

    If anyone wants to come join me, Grover, Cindy (candrews) and all of my good friends for a great cause (and a great time!!!), just let me know!!!

    Hugs to all,
    Sue

    in reply to: Bowling Fundraiser! #55349
    scragots
    Member

    I wish we could get a full contingent of CC.orgers, but I know that we all live so far apart. Hopefully we will have a big turnout and will be able to donate a lot of money to CC so they know we believe in them and their purpose. I appreciate all the support we have…from the CC board, Grover, Cindy and all of my friends. We will keep you all up to date. You are all a part of this!!!

    Hugs,
    Sue

    in reply to: Bowling Fundraiser! #55341
    scragots
    Member

    You are all just amazing!!! Thank you, thank you, thank you!!! Where I was excited this morning to be working on this fundraiser…you have all now raised it to another level!!! I cannot wait to meet Cindy and Grover and both of their families in April (or before!!!)! I really appreciate all offers of help and all the wonderful ideas for the flier placement! I will send out PDF files of the flier (or I can send actual copies if you would rather have them) by the end of the week. Angie (one of my great friends who is helping with the fundraiser) is out of the office today but will be back in tomorrow. She has the most current flier form.

    If anyone else needs the flier in either form, please just let me know. Maybe we can double our amount and donate $6000 instead!!!

    Ideas for flier placement, prizes, auctions, raffles…anything is greatly appreciated!!!

    Thank you all sooooo much!!! :D :D :D

    Hugs to you ALL,
    Sue

    in reply to: Bowling Fundraiser! #55334
    scragots
    Member

    Thanks, Lainy!!! My ears were burning so I had to come check out what my “peeps” were talking about!!!

    I will definitely keep everyone up to date on the bowling fundraiser! It really is a real thing, bowling alley is booked, live band has been booked, fliers and requests for goodies are in the mail!!!

    Here is the link to a First Giving page for donations to CC.org pertaining to the fundraiser. All proceeds go directly to CC.org thru them. I see NONE of this money!

    http://www.firstgiving.com/fundraiser/susancrago/somethingforsue

    (My good friend created the fundraising site and came up with the name…not ME!!)

    If anyone is interested in info on the bowling fundraiser, just let me know! it’ll be held in Indianapolis on April 14th at Woodland Bowl at 96th and Keystone. Let me know if you are interested!!!

    I hope I am not breaking any rules on CC.org, please let me know if I am.

    And I am accepting ALL ideas for the fundraiser!

    Love you all,
    Sue

    in reply to: Bowling Fundraiser! #55332
    scragots
    Member

    Cindy,

    YAY!!! That all sounds fantastic!!! Put it on your calendar…April 14, 2012 at 1:00. It’ll be in Indy at Woodland Bowl at 96th and Keystone on the north side. And you think I can bowl??? I just pretend!!!

    Where are you from? Do you live in Indy? I hope to get Grover and his family to come too! Convince him when you see him!!!

    Hugs,
    Sue

    in reply to: Introduction #51907
    scragots
    Member

    Suzanne,

    I live just north of Indy and had my resection at IU Med. My doc was Mary Mallucio. She was fabulous and did surgery three weeks after I met her. I was lucky, the tumor was only in one lobe of my liver, but she is very experienced in CC and I had complete faith in her. I am 4 1/2 years out from surgery and still having clear scans. I am sure all of the doc at IU Med are great, but I loved mine. I hope everything goes well for your dad. I am so sorry you are all going thru this. It is so terrifying.

    People on this forum are wonderful. Please feel free to join in and ask all the questions that you can think of.

    hugs,
    Sue

    in reply to: Recurrence rate #51322
    scragots
    Member

    Hello,

    Your diagnosis sounds like mine, and I too had a resection with clean margins (and no chemo). My doc also gave me 50/50 odds and I am now at 4 years, 5 months with no recurrence!! So you see, it truly is possible to have no recurrence. I know it can come back at any time, but my doc said the more years you go without one, the less likely it is to recur. So, I am moving full steam ahead with my life. It was very hard in the beginning, but you have a great start. Good luck to you and please stay on this site. People here are an amazing source of help.

    hugs.
    Sue

    in reply to: A lesson learned… #50687
    scragots
    Member

    Marion,

    The study is being run by 8-9 hospitals in the US. My hospital is IU Medical Center. They are studying people with “drug induced liver injuries”. It is not run by the Augmentin people, Augmentin is only one of the drugs known to cause this reaction in people. They asked me a lot of questions about where I have been and other meds I take. They drew 10 vials of blood and took a urine sample. They are compiling all the info from approx. 204 people (that’s the number of people in the study since 2004, so you can see it’s not a common occurrence) and continue to watch them thru the next few years. I go back in 6 months to have my blood and urine tested again. If all is well, I will merely go onto a “calling list” and they will only call once a year to check on phone numbers and addresses. If my levels don’t go down, they continue to follow you every 6 months.

    This injury has led to transplant and even death. Once again, I had someone watching out for me from above.

    Hugs to all,
    Sue

    scragots
    Member

    Mark,

    Thanks for your email. I apologize for taking so long in getting back to you. I had the right lobe of my liver and my gallbladder removed in January of 2007 (feel free to check out my early posts). I remain cancer free so far. Having a successful resection is the only true “cure”, altho many people live with this cancer for many years. It sounds like your dad is making all the correct decisions. As far as chemo is concerned, I had none. My doc felt there was nothing for the chemo to attack and suggested not doing it. We will see how that decision affects my future. I may regret that decision some day, but for today, all is well. I am down to one CT scan each year and I do not worry about the cancer returning. At least, not EVERY day. Some days are still difficult. All you can do is literally take it one day at a time. I know that sounds trite, but it’s true. People in this forum are wonderful. Please come here and ask any and all questions.

    Hugs,
    Sue

    in reply to: 6 weeks after surgery #47746
    scragots
    Member

    Welcome, Fabyke! I am four years post resection with clear margins and I had no chemo after surgery. My doc simply said that there was nothing for the chemo to attack. Let’s hope it stays that way!!! Congrats!

    Sue

    in reply to: Clean so far (sort of …) #47889
    scragots
    Member

    Jim, I too have two nodules in my lungs that they keep a sharp eye on, but they have not changed in a couple years and they feel they are the same that Lainy spoke of. Try to relax and not worry until you know to worry. (Yes, I know how hard that is!!!)

    Good luck!
    Sue

    in reply to: Treatment Options #45957
    scragots
    Member

    Brad,

    I am from Indianapolis and I had surgery at IU Med Center in Indy. My surgeon was fantastic. She came to Indy from Sloan Kettering. Her name is Mary Maluccio and her office number is (317) 278-1531. Her specialty is the liver and she is both an oncologist and a surgeon. I always felt like she was honest and straight-forward with me and I trusted her with my life. (And still do). I am almost four years out from surgery and cancer free.

    Best wishes and hugs,
    Sue

Viewing 15 posts - 1 through 15 (of 117 total)
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