MI Survivors

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  • Mich
    Mich Member Posts: 15
    edited March 2006
    Loved meeting everyone Saturday! What a wonderful group of ladies- I was surprised how comfortable I felt meeting everyone for the first time. Count me in on the walk. Sphynx and Candi thanks for the pic's.
    Best wishes
    Michelle
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  • normalcani
    normalcani Member Posts: 230
    edited March 2006
    Hi Guys.......

    Gerry, I can't find that little pad that I brought with me to the restaurant... Chemobrain in effect..... lol.....

    Anyways, I went to the site and here is the addy for the walk in June..... It is 6/10/06 so hopefully you can come.......

    http://www.karmanos.com/detroitraceforthecure/index.htm?co=race

    Hope this finds all you gals well........

    Anna, how was your first day back to work......?? Hope it has been going okay for you.......

    Hugs......
    Candi
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  • Anna_Marie_Rogers
    Anna_Marie_Rogers Member Posts: 198
    edited March 2006
    Irene, Work is exhausting! I get home from school too tired to do any housework or schoolwork. Do any of you have any energy secrets that help you to work? I know I should exercise too, but I am in so much pain from knees, torn rotator cuff, etc., that I just haven't done it. Has anyone else experienced more numbness in fingertips as the time after chemo gets longer? Mine seem to be getting worse and worse.
    Ann
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  • SEI
    SEI Member Posts: 191
    edited March 2006
    Candi - thanks for the information. Are we going as a team, or individually?

    Ann - Sorry to hear you're so exhausted. It's tough when you can't exercise. I started feeling better when I started eating lots of fruits and veggies, and water, along with a multi-vitamin. I never really had the tingling - I had more of a burning, itching, fire ant feeling in my hands until a few weeks after Taxol was done. But it seems like I've seen a few threads about it. I don't remember (surprise!) if they were in the Moving Beyond or Going Through Treatment boards. I would definitely mention it to your onc, though.
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  • Sphynx
    Sphynx Member Posts: 611
    edited March 2006
    I'm definately walking in June. I see they are allowing people to sign-up now. Is there enough of us to make a team? We could be a bc.org team if anyone wants.

    Ann - I think it takes a very long time to get your energy back after chemo. I know I had unrealistic expectations until I read experiences on this board. I still have those drag-out tired days but do see a slow improvement. The stairs at work used to kick my rear but they are now manageable. I do not have the numbness. You might want to post a question to everyone on another post about that one to see who can help you there.

    I received a PM from LorieAnne. She is not physically doing too well right now but still would like to meet if we get together around Canton or Plymouth in May or June if she is feeling better by then. I told her about the Komen walk and that we probably will get together again before then. I'm always game and Canton is fine for me and I know a few of you are from that area. If we cannot get a all-out get-together again, maybe we can do a spur of the moment thing when we hear that Lorie is up to it?

    Has anyone else noticed that bc.org looks like it has been hacked? There are some very weird posts on some of the other topics. Like an idiot I went to one of the links and it was some hard-core porn. My home computer is probably hosed. I'm not talking about the one that was a 'shopping thing' that was a controversy a little while ago. These posts look like tons of html code and links. Just don't go there!

    Hope everyone is well.
    xxxooo
    Nancy
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  • Mich
    Mich Member Posts: 15
    edited March 2006
    Spynx,
    I love the idea of walking as a team. Please let me know if that is something everyone wants to do.
    Ann-for the first time in my life I seem to need a nap every afternoon. I too wonder when this will go away. I can't remember where I read this article , but it said fatigue can last up to several yrs. afterward. Lets hope that is not the case for us.
    Michelle
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  • SEI
    SEI Member Posts: 191
    edited March 2006
    Hi All,

    I think walking as a team sounds like a great idea. I haven't had a chance to check out the Komen site (darn dial up is sooo slow) completely - do we need a specific number of people?

    I'm also up for a get together any time. I don't have kids, so my schedule is pretty flexible.

    Ann - I remembered after my last post that I took vitamin B6 (I think it was 100 mgs 2 x a day) all through chemo and for a while after for my hands and feet. It didn't help the burning, but I never got real tingly. I know there are a few different things that are used - I just can't think of what they are.

    Nancy - I haven't noticed anything real weird. But then, I don't get to read as many posts as I'd like to (again, dial up is sooo slow). I'll keep an eye out though, and definitely won't click on any links. Did you let Melissa know?

    Irene
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  • Sphynx
    Sphynx Member Posts: 611
    edited March 2006
    Irene - The hack is in the ILC post. I don't usually go there but saw the Subject line was html code and I wondered what it was. Kats notified Melissa but it isn't cleaned up yet. I'll send Support a note also.

    We need 15 to form a team. It is no big deal to be a team or individual though. We will wear the survivor t-shirts that are a different color than the supporters. So, we would need something else besides t-shirts or hats (they give us those also) to show we are a bc.org team.

    My 3 friends will walk and my husband always signs-up and contributes but doesn't walk so, counting myself that is 5 people. We would still need 10 to commit for our team.

    You save money by signing up before April or May. I'm not sure if we can sign up as individuals and then slide over into a team if we get enough? That would work out the best. I just sent an email to raceladyjan@wideopenwest.com and I'll let everyone know what she says.

    xxxooo
    Nancy
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  • Lorie_Anne
    Lorie_Anne Member Posts: 77
    edited March 2006
    Dearest Nancy,

    Thank you for your sweet post. You are such a loving soul.

    Feeling alittle better..still do not have my 'ole spunk-but, maybe in time. My oncologist said I am "leaking" somewhere..not sure what that implies..I just told her I do not want to go looking for problems.

    As far as the walk, most of you know that I have major suspicions about the "pink" thing in general. Until I see major developments in the "cure" for cancer; or better yet alternative therapies I just cannot agree with any of it. However, I applaud you all if you do decide to walk:-)

    Let's find a cure. Peace.

    Lorie Anne
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  • Sphynx
    Sphynx Member Posts: 611
    edited March 2006
    I received a reply from my email to Komen:
    Quote:


    Nancy - You can decide later to form a team. You'll need to contact the Help Desk at Active.com and let them know who is registered that you want to switch, and they should be able to help you.
    Should you decide to do this, and then fall short of 15, not to worry. We will treat you like a team, with a sign if you want, etc. You won't be eligible for the team awards, but we won't kick you out!
    FYI - Think about the survivor trolley for survivors who just aren't up to walking. You can find info on the website - www.karmanos.org/detroitraceforthecure - and should any of your survivors want to take advantage of this, you can contact Laura Zubeck at raceforthecure@karmanos.org, or phone 313-833-0715 ext. 2114 to reserve a spot. The gals who ride the trolley always have a great time!

    Let me know if I can be of any more help.

    Jan Tebelman
    Teams




    Lorie,
    I can understand your reservation about the "pink thing". I do not see how the 3 day gets any money back to research after all the hoopola of raising 2K per person and then having to feed and shelter everyone for 3 days. But, I'm hoping the Komen race at least draws awareness and if anything is left over for research - better than nothing.

    Hope they find your "leak" and that you get stronger every day. Give us a yell when you feel like getting out and we will plan something around you.

    All my best to all my Michigan friends. Let me know what you think about a team and if you want to go that route, a nifty team name!

    xxxooo

    Nancy
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  • iamDawn
    iamDawn Member Posts: 6
    edited March 2006

    Hi, I live in MIchigan-usually go to the chat rooms and don't know how to use the boards very well. Is anyone from around the Jackson area? Would love to hear from you.

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  • SEI
    SEI Member Posts: 191
    edited March 2006
    Hi Dawn,

    I'm up in Lapeer County, not near Jackson, but I didn't want you to think you were being ignored. Welcome to boards!

    Irene
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  • Not_Me
    Not_Me Member Posts: 180
    edited March 2006
    Welcome to the MI group Dawn. We are from all over MI and other places…so you are very welcome.

    I also wonder the 3 day walk and the money they raise. I too have reservations about raising money for the cause as I feel like we contribute so darn much money to fight BC anyways. But I think that the Race for the Cure is a great way for us to bond while raising awareness. I don’t think we will have a problem making the numbers for a group.

    Question for Nancy…if we have trolley riders or 5k runners are they considered part of our group? Or is it just the walkers?
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  • Sphynx
    Sphynx Member Posts: 611
    edited March 2006
    Dawn,
    There are a couple of women from Lansing, a few from Howell and I used to talk to a few women on the West part of the State but they haven't been online for a while. If you are up to the drive, join us for our next get-together.

    Chris,
    No, it doesn't matter if you take the trolley or walk, you can still be a part of the same team. I'll have to read more about what setting up a team entails. I think we would be the largest survivor team since most of the other teams are companies or family members of a survivor. Ford Motor is the largest team and I think there are so many of them that they don't all walk together but they meet somewhere for a breakfast. If someone doesn't want to walk or do the trolley, they can stay near the tents and sit back and take it easy. No pressure to do anything.

    When I walk with my two survivor friends, we seem to be about the largest group I've seen of survivors together and that is only 3 of us!

    I just copied this from the Komen site:
    Quote:


    # In 2005, 400-plus teams comprised more than half of Race participants.
    # 15 or more participants may register under a team name
    # Members receive Race packets from their Captain prior to the Race or may have them shipped individually to their homes (additional charge of $6.50 per person).
    # Registration is easily done online by credit card on our secure site— and, online fees are lower!
    # Teams are eligible for Ford Largest Team Awards based on team size within these categories: Community Team, Corporate Team (3 sizes), Family-Generated Team, School Team - K-12 and Colleges/Universities.
    # A variety of award incentives are also offered to teams in the following categories: Johnson & Johnson Grow Getters (greatest proportional increase), Visions Spa Salon Spirit Award (best demonstration of team spirit), Detroit Shock Pretty in Pink Award (greatest number of breast cancer survivors), Detroit Tigers Hot New Kid on the Block (largest new team), the Co-Survivor Award (for most inspirational Co-Survivor essay), and New Balance Friends for the Cure® (largest amount of donations, awarded in September).
    # Teams offer added visibility for your organization through signs or other team indicators you may provide (e.g., T-Shirts, caps, kerchiefs, etc.). Teams that request upon team registration will receive a sign imprinted with the team name to carry on Race day.


    Chris - will run the 5K? I think you are the only runner among us. I'll walk it

    Now, what about a team name? How about bc.org, breastcancer.org?
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  • SEI
    SEI Member Posts: 191
    edited March 2006
    Nancy -

    Thanks for doing all the research. I think we should go with the full name of the web site so anyone who sees the team name will know how to get here.

    Should we contact Melissa about t-shirts as soon as we get a head count?

    Oh, and I'm sure I'll be walking, and not running, too.

    Irene
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  • Sphynx
    Sphynx Member Posts: 611
    edited March 2006
    I still have a t-shirt from an earlier get-together. I'd kind of like to wear the race survivor t-shirt that you get for joining the race and do something else to show we are a breastcancer.org team. But, I'll go with what the team prefers. Maybe Melissa can have someone make us "Miss America type banners" that say breastcancer.org or something else that stands out? (hint hint Melissa)

    I don't think any of us are going to want to carry around the banner but we should do the banner if we meet for a picnic afterward. But, maybe we can start off with the banner, take some pics and leave it at the survivor tent? Maybe someone will be staying behind anyway and watch it. We definately have to get the new names on it for those who haven't signed it yet.
    image
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  • Not_Me
    Not_Me Member Posts: 180
    edited March 2006
    You are right...I want to run this one...but ONLY if I can be a part of my team. I have others that I am bringing, but they are not survivors...just family and friends of me! I am super excited. How can we promote this so that we can win the largest survivor team? Nancy...I am nominating you to be our leader...please, please, please?

    And if we can get our supporters to come out and walk or cheer us on...we can plan a great follow up picnic. Maybe we can rent a shelter in Hines Drive...in case it rains?

    This is going to be so exciting! I support the team name...or anything else you come up with.

    My only thought...I started a new job four months ago and no one knows about the C. And I don't plan on telling anyone either (unless the darn stuff comes back and I have to go thru tx)...so if we win and get press I will have to wear sunglasses. But then again...I will be wearing them anyways! Don't get me wrong...I am so proud to be a survivor...but I was discriminated at the last workplace and do not want to go down that road again.

    Cheers!
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  • Sphynx
    Sphynx Member Posts: 611
    edited March 2006
    Ok - you twisted my arm. I'll go online and set up the team. I'll let you know where we go from there.

    I was thinking of breastcancer.org - Cybersisters and friends??? I'm not even sure how long they will allow the team name. Is that too much? It looks like we will have some supporters as well as survivors and I don't want anyone to feel left out. Like anyone WANTS to join our crummy bc club!

    I'll try to set this up tonight or tomorrow. I'm open for suggestions about names or where to go with this. I promise to keep you anonymous 'Not Me' and understand where you are coming from.
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  • SEI
    SEI Member Posts: 191
    edited March 2006
    Thanks, Nancy for agreeing to be our team leader.

    I'll think about the name, but I'm not the best with names as you know. Not one of our six cats was named by me.

    Irene
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  • Sphynx
    Sphynx Member Posts: 611
    edited March 2006
    We have a Team! I chose Breastcancer.org because it limited the digits. So, to join the team, go to this link:



    Team registration page emailed to me



    If you have problems with that one, try this one:



    Team registration link



    I have to warn you, you can get lost on their web site. Maybe we have been spoiled by bc.org. When you get there, they should have a drop-down menu to choose the team.



    If they ask for a password to join the team, please send me a private message or email and I'll send it out. I had to set one up and then when I registered myself, it asked for it. I registered with my real name. No, it isn't Sphynx. That's my hairless cat. Irene, we took forever to find just the right names for our pets. The poor things stayed nameless for weeks.



    Don't worry when it says that they are setting up a fundraising web page for you. They do this for individuals and teams and there is no pressure to do any fundraising (like the 3-day walk).



    I do not know if they set up a team web page for us. I'll find out.



    The past winner of the largest survivor team was "Team New Prospect Missionary Baptist Church". Hey - that is a lot of characters!



    If anyone has any questions, please let me know. Sign up now and it is $25.00.
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  • Tonya88
    Tonya88 Member Posts: 10
    edited March 2006
    Hello, ladies! I am new to this site. I am from Michigan, too. I would love to get together and chat.
    Sincerely,
    Tonya
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  • Tonya88
    Tonya88 Member Posts: 10
    edited March 2006

    Hi, Sphynx. My name is Tonya and I am new to this site. I would love to walk with all of you in the race for a cure. Please contact me if you still have spots available. Thank you!:)

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  • Sphynx
    Sphynx Member Posts: 611
    edited March 2006
    Welcome Tonya. Everyone is welcome to join us although I am sorry you had to join our "club". Sure, we would love to have you be a part of our team in the race.

    I made a few changes to the race stuff. I was able to edit the team name and add more characters. So, I called it "Breastcancer.org Cybersisters and Friends". It was easy to change so I'll take any suggestions if you want me to change it again.

    Also, since they make you set up an active.com account, I was able to edit my profile and remove my last name. I'd prefer a little bit of anonymity also. So, after they approve your payment, you may want to do that.

    I don't think you need a password to join the team. If I am wrong, please send me a note or post it here.

    Nancy
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  • SEI
    SEI Member Posts: 191
    edited March 2006
    Nancy -

    I tried to sign up and we do need a password. Would you PM it to me?

    I'm posting rather than PMing you so everyone else will know to get the password from you before trying to sign up.

    Thanks again for setting everything up.

    Irene
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  • Anna_Marie_Rogers
    Anna_Marie_Rogers Member Posts: 198
    edited March 2006
    Michigan ladies, especially anyone treated at Troy Beaumont, please read my post, "Is this normal?", in Moving Beyond Cancer forum. I'm confused & feel rather rejected, but I tend to worry too much, so I'd like your opinions.
    Thanks!
    Ann
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  • Sphynx
    Sphynx Member Posts: 611
    edited March 2006
    Ann - I hope you find an oncologist. You got good advice on the other post.

    Everyone - should I post the password to the team sign-up? I'm not sure of its' purpose but still I'm reluctant to post it. No one seems to be jumping in and signing up. There is a team of one right now! image
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  • normalcani
    normalcani Member Posts: 230
    edited March 2006
    Hi all...... How are things.......??? I hope all is well for you guys...... Nancy, I plan on signing up, but don't have the cash right now to do it.... I get paid on the first, but am having my lat flap on the 29th so I plan on signing up sometime in April.... I'll pm you my email addy and you can send it to me that way...... It won't be a team of one for long...... I can't wait to do it.....

    Anna, you need a new oncologist now.... That is ridiculous the way you were treated.....

    Spring is almost here...... Yeah..... I love spring......

    Hugs to you all..........
    Candi
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  • SEI
    SEI Member Posts: 191
    edited March 2006
    Hi Everyone,

    After a couple of days off-line due to computer problems, I was finally able to register. So Nancy, we are now a team of two!

    I'd be reluctant to post the password, too. I don't know what damage someone could do with it, but better safe than sorry, if you don't mind having to PM the password to the multitudes of people I just know are going to register!

    Ann - Sorry you had such a bad experience with the new onc. I say try, try, again. There's got to be a good one out there for you!

    Candi - Hope the surgery goes well. Keep us posted!

    Irene
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  • Sphynx
    Sphynx Member Posts: 611
    edited March 2006
    All right Irene - team of two!

    I believe it is cheaper if you sign up before the end of April. I'll find the exact date and post it.

    Candi - how was your surgery?

    Can you believe it is finally Spring?

    Have a good weekend everyone.
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  • Not_Me
    Not_Me Member Posts: 180
    edited April 2006
    I am going to register my husband and myself for the race today. And I think my daughter and neice might be able to do it as well. What walk are you planning on?

    I look at the picutres from last year and it might be a good idea if we do something to make us look different.

    Nancy...how do the shirt sizes normally run...it looks like the only choices are S and L?

    I have alot of flowers up already and the robins are all over. It is definetly Spring!
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