The Leukemia & Lymphoma Society - Fighting Blood Cancers

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Karrie Munkittrick and her nephew AustinKarrie Munkittrick was, in her own words, reserved and unassuming - an artist, wife and mother of two healthy daughters. Then a single event turned her into a one-woman army. Her enemy? Leukemia. Not just any leukemia, but leukemia that attacked her tiny, two-month old nephew, Austin. The entire, extended family pitched in to support Austin, doing whatever they could, and sometimes just being there with him and giving his parents breathing room and time to spend with his big brother, Hunter. But when she wasn't helping in that way, Karrie started thinking about ways to help find cures.

 

She found a way - Light The Night Walk. Her initial Walk reinforced her belief that Light The Night Walk was a great way to support LLS in the search for cures. The following year, Karrie became a team captain, getting people to join the "Austin's Warriors" Light The Night team. She explains that asking people to donate money would normally have been difficult for her; but knowing that the money raised would help find cures for leukemia she became a dynamic fundraiser. As a team captain, she raised funds herself and acted as a rallying force, urging on her team, which raised more than $6,300 in 2009!

 

This year, she found another way to help. As her husband Michael explains, "She's been a light to so many people and it has changed her. Now she wants to go where few people would ever consider going." Karrie is very pretty, both inside and out, and has long, beautiful hair. She decided to shave her head as a participant in LLS's Totally Baldacious campaign, in which people raise funds by shaving their heads to show support and solidarity for patients who lose their hair during cancer treatments.

 

If you or a loved one has been diagnosed with a blood cancer, LLS is here for  you:
To speak to an information specialist, call (800) 955-4572, chat online at www.lls.org, or email infocenter@LLS.org.
Find  peer support on the Blood Cancer Discussion Boards.
Support the fight against blood cancers with a gift to LLS.

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Non-Hodgkin lymphoma survivor, honored patient hero, Light The Night Walk Fundraiser, First Connection volunteer and Survivor mom extraordinaire, Christen Reilert is Giving and Getting. When you participate in Gap's Give and Get program, you're supporting people like Christen, who know the importan

Patient Story: Christen’s little miracle of hope

ce of funding life-saving cancer research.

 

Download your LLS coupon today and use it in any Gap, Old Navy, or Banana Republic store from March 18th -- 21st.

 

Give and Get with Gap and LLS this spring and take advantage of a 30% discount while you support The Leukemia & Lymphoma Society's work to cure cancer and improve the lives of patients.  Christen, we profiled you and your amazing story on an LLS Blog post last fall (see: Patient Story: Christen’s little miracle of hope). How are you doing?

I'm doing very well, thank you -- and so is my 'miracle of hope' Jaden!            


You were diagnosed as a Young Adult with non-Hodgkin lymphoma (NHL) -- how did you get through your treatment regimen?            

I credit my family and friends - but mostly my husband. When I lost my hair and went bald he told me every day how beautiful I was and how much he loved me. And I'm thankful for my Mom who went to every single treatment with me. That got me through!            

 

I'm going to ask you two questions that Gap is using in their Ready, Set Give and Get contest because we think you epitomize what it means to Give and Get. First, what have you done to make an impact on your community?            

The moment I was diagnosed with cancer I knew I had to survive and that became my entire focus. I had a very aggressive treatment that was very difficult at times but I always went in with a smile on my face. But I did survivie -- and as soon as I was well I knew I had to give back. I contacted LLS with the intention of becoming as involved with the mission as possible.            

 

Almost immediately, I began fundraising for the Light The Night Walk program, creating a team (Christy's "Cure"ators) that haa been in existence now for nearly eight years.            

 

Then I began volunteering for First Connection, that's LLS's peer to peer support program. My husband and I volunteer in other ways, as well -- and the folks at the local LLS chapter will tell you that I can always be counted on to speak at an LLS event!            


Now, what results have you seen -- and what impact has that made on your life?           

With every Light The Night Walk, every First Connection support group meeting I'm in contact with, every speaking event --- I'm reminded how powerful my story is and what a source of hope and inspiration it can provide to others. People come up to me all the time that I don't know, people who are in treatment or are caregivers for people in treatment and they thank me for sharing my story. Fundraisers thank me for sharing my story because I remind them that 'Cancer Survivors Have Miracles Too.' That's really become my mottoand the mantra for my life and the hope I want to share with others touched by cancer. The more I give back the more I'm aware of the importance of doing so -- just like Gap!            


What are your thoughts on Gap's Give and Get campaign and the fact that LLS is one of the benefactors!            

I think it's wonderful! It's great of Gap to recognize The Leukemia & Lymphoma Society and the hard work we put forth to find cures.            

 

It's funny because when I was in High School, my friends and I would only shop at Gap. A friend of mine used to say, "if you didn't shop at Gap, you just weren't cool.!" Now, as an adult I still shop at Gap and Old Navy and Banana Republic -- and spend most of my time now at Baby Gap for Jaden!            

Giving back has been huge for me. As soon as I became cancer free I was determined to do something to help others. You can give back too by supporting Gap's Give and Get campaign for LLS!                     

 

Download your LLS coupon today.  The Gap Give and Get Campaign benefiting LLS runs from March 18th -- 21st.

 

Download the LLS coupon to take advantage of the 30% discount available from all Gap, Inc. stores. Then share this post with your family, friends and social networking contacts. Give and Get with Gap and LLS and help save live

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First Post in earth2010's Blog

Posted by earth2010 Mar 11, 2010

Trying out my new blog

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The start in Thrillskr's Blog

Posted by Thrillskr Mar 9, 2010

And so we begin, Bruce was diagnosed with AML (with maturation) on November 6th 2009 and it is now four chemo regime's later and we are gearing up for the TBI and perfect match BMT. He is vomiting for the first time since diagnosis and I am heading to live by his side through this journey. We have three beautiful daughter aged 20, 16 and 13, and are strong in body and mind. Our oldest has moved back home to care for her sisters while I am at the hospital. We are lucky that we live in Canada and have employers that fully support us, otherwise this journey would be so much more difficult. I am leaving work tomorrow and will be right by Bruce's side for the duration.

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Well I am trying.

 

1) My time is improving (maybe a little) that's the .5

2) Loose 20 lbs... Don't want to talk about it

3) Exceed $100k in TNT fundraising.. DID IT!.. (took 7 years)  Thanks to the generousity of caring people!.

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I am wondering if we can't all pledge to offer help and support to one another as one would expect of a "Support Group"? We can all be more caring and considerate of one another and have a genuine feeling of care and support for all. Rudeness in our posts is not necessary, though I realize there will always be differences of opinion, the main fact is this is a support-based group and is a priviledge provided us by the LLS that we should all be grateful of its being and should treat it with such respect. The forum itself should be appreciated and duely respected. And with that goes respect for all people chosing to be a part of it.


Surely we can pledge to one another that we will try to be better mannered and more caring and considerate and keep harmony as a guideline within our hearts and minds accordingly. Yes, manners are still part of this world and should be applied. Surely we all wish each other well and best wishes and our posts should reflect it respectively. That being said, let's hope we can clean up our act here and get on with the business of supporting each other. After all, how will our actions here look on our big resume of life??


Respectfully and with much care and best wishes to all,


mimi

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Wow, I can't believe it's been so long since I updated! Sorry, folks. I will endeavor to blog at least 2 times a week, hopefully more!

 

Thank you to the folks that donated at my Team in Training Website last month. As promised, I did a random drawing for the Team in Training duffel bag, and the winner is...

 

Amanda B.

 

I am working out a few ideas for a March drawing, so stay tuned. What would you rather win, a Caribou Coffee gift card, or a Team in Training item? Any other suggestions?

 

Also, a huge thank you to those people at work that have dropped by to buy popcorn. To date, I have sold $30 of Orville Reddenbacher's Smart Pop, and will be putting that into my fundraising account this week. Please swing by my cubicle instead of that nasty vending machine -- it's better popcorn, and for a great cause!

 

Sadly, I didn't reach my $500 goal for February. This means I am going to work twice as hard during March, as I am down to six weeks to my recommitment deadline and I need to raise at least $1900 by April 20th to continue my training.

 

For some strange reason, I was laid up with a migraine the end of last week and most of the weekend. As you know, I have a wheat allergy, and I am wondering if there was something lurking in a food somewhere, to trigger this intermittent headache.

 

At any rate, I wasn't able to train with the group this last Saturday, and my weekly mileage took a huge hit. Nevertheless, I am feeling better today and hope to log at least 3 miles tonight. The weather here is becoming more spring-like (can I hear a huge HOORAY??? Thanks!), so my doggie might just benefit from the change and get to walk with me this evening. She's imposing enough that no one bothers me when I am out, and the exercise does us both good.

 

Thank you again to those that donated, and if you are reading this, please, please consider making a donation. Every dollar counts! Skip that latte twice a week and put that $ to help kick cancer!!! You can donate right here, online, securely: Jenn's Team in Training Website and remember, all funds go to the Leukemia and Lymphoma society to research and fight blood cancer!

 

In health,

Jenn

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This is your chance to win a $500 Gift Certificate - and a $10,000 grant for LLS!


Our friends at Gap have launched a contest on Facebook that will run through March 21st!  They are looking for the best story on how you "give" back to the LLS community and what you "get" in return.

 

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To enter the contest you must submit a photo and answer these two questions: 
1.) What have you done to make an impact on your community?

2.) What results have you seen to date, and what impact has that made on your life?


Enter today! Make sure you cite The Leukemia & Lymphoma Society (LLS) as your charity of choice --- andGOOD LUCK!

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My long Journey in new girl

Posted by nurs2call Mar 1, 2010

Hey, I am new to this so I hope that I get it right....My hubby was diagnosed in 2006 with Multiple Myeloma and now he is starting down the Stem Cell Transplant road.  I am worried about !Money!....Lodging....ect.....  so any help or info is appreciated....

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Jacque Carter fell in love with Team In Training in the fall of 2003. She had been a runner when she was younger but a dislocated knee ended her running career. However, she became an avid race walker and by 2005 was coaching the walk team for the National Capital Area chapter. Never one to shy away from attention, Jacque and a group of friends sported angel wings during the Nike Women’s Marathon to Benefit The Leukemia & Lymphoma Society in San Francisco in 2008. They called themselves Peggy’s Pals to honor a friend battling leukemia. Last summer, Jacque once again decided to take a very visible stand to show her support and solidarity for cancer patients, when she shaved her head following a training run with her team.

 

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Her story was beautifully documented on the New York Times Running Voices series

 

Thank you for being a Totally Baldacious pioneer, Coach Jacque!

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Inspired by a brother from their Minnesota chapter who is undergroing treatment for lymphoma, as well as a brother who lost his battle with leukemia, members of the FarmHouse Fraternity, a fraternal organization whose members are generally involved in the study of agriculture and related fields, have been going Totally Baldacious at college campuses across the country. Take the Virginia Tech chapter of the fraternity, who had  a small gathering of members and friends last week where they  took donations for four brothers, and the brother  who garnered the highest contribution got shaved.

 

Meanwhile, at Washington State University, the FarmHouse members gathered about 50 members and friends for a "mane" event . Even some members of fraternity Delta Delta Delta also attended.  “It means a lot because I have a friend who is suffering from lymphoma as well,” said FarmHouse philanthropy chairman Leonel Castellano. “I hope a picture of us with all of our heads shaved brightens up his day. I’m proud to show him what I’m doing to support the cause.” FarmHouse President Matthew Doumit, a junior forestry major, said  “It was about more than raising money. For us, the big thing is making a statement by going around with shaved heads and really raising awareness.”    FarmHouse Chapters in Wyoming, Texas and Illinois and other states planned events as well.

 

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Photo courtesy of Zachary Lyons of Virginia Tech, who is studying Dairy Science.

 

Here's to the FarmHouse Fraternity -- and a Totally Baldacious and totally cool!

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Starting weight: 185lbs and gaining, today: 182lbs.

 

"You will run and not grow weary," Isaiah 40:31 What an amazing promise that is, and one that God has kept for me.

 

Although I have been walking or running to work each day Monday - Friday, I have not done any running on the weekend for the last couple of weeks as I have been fighting a chest and sinus infection and needed the weekends to rest. So I was pleased to be able to get out and run today. I did a Tae Boe work out and stretch then ran what shoud have been a 4 mile loop but I took a wrong turn somewhere and am not sure how long the run actually was. I'm going to have to work out the milage on the computer (as soon as I work out how to). I was doing quite well with a run/walk ratio of about 3:1, or to put it on the telephone pole index, about 12 poles run to 4 walked, until I came to a prolonged uphill stretch which set my run/walk ratio back a little.

It was great to get out and running today, I have been feeling quite down by the end of the weekends when I haven't run. For someone who 6 months ago couldn't manage more than a few yards running before having to walk for an extended period while feeling like they where going to die any moment, and to whom a 5 mile run was inconceivable, this state of afairs is quite remarkable, it's even more remarkable when you think that just a few years ago anything more than a casual stroll would have had me bed ridden for a week or two. It's hard to express just how exciting it is to be able to be physically active after so many years of forced inactivity, of knowing that even when you feel good you have to conserve that energy and do even simple tasks a little bit at a time. To now know that I can set out to run a 4 mile loop and will be able to do so, and feel great afterwards, is astounding. It makes me want to shout from the roof tops "How great is our God!"

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Let me just say from the start that I am not a long distance runner. I don't jump out of bed in the morning looking forward to a long run. Even when I was at my peak fitness I was a sprinter and hurdler, now at 45, after 13 years of Chronic Fatigue syndrome and three children, I am far from my peak fitness and considerably over weight. But one thing I have learned over this time is patience and mental and emotional endurance. My Challenge is to add to that physical endurance.

I know this is not going to be an easy journey and I will be tempted almost daily to give up, but the effort to get myself out and running will be worth the goal of finishing a marathon in honour of my mother Margaret Aycock, who passed away in November 2009 after a short battle with Acute Myeloid Leukaemia, and to the glory of God who heals and sustains and strengthens me.

 

                                                        But those who hope in the Lord will renew their strength.

                                                       They will sour on wings like eagles;

                                                       they will run and not grow weary,

                                                       they will walk and not be faint.

                                                                                                   Isaiah: 40:31   

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Actor (Sex and the City, Californication, Lost, Six Feet Under, Ransom, Taps, etc), author (Time On Fire: My Comedy of Terrors, It's Only Temporary: The Good News and the Bad News of Being Alive), screenwriter and journalist Evan Handler is the Honorary Spokesperson for The Leukemia & Lymphoma Society's (LLS) Totally Baldacious campaign. As a super long-term acute myelogenous leukemia survivor Evan knows first hand the importance of funding life-saving cancer research and so his role as Honorary Spokesperson is particularly significant.


Here reached out to Evan for this blog with some questions and have included his responses below:


Part of the motivation for the Totally Baldacious campaign is to call attention to the importance of showing our love and solidarity to cancer patients.  How did  has the support you've received from your friends and colleagues helped you while you were undergoing treatment?


I had a lot more friends when I was diagnosed at 24 than I do now at 49 - which is a very good thing, overall. Knowing that there was a community following me, missing me, and hoping for my recovery was a tremendous source of comfort and inspiration. It often strengthened my resolve. And, oddly, knowing that so many of my very young (at the time) colleagues were shaken by my diagnosis also inspired me to push hard to get well. I felt a great sense of determination to show them, and the rest of the world, that such a serious diagnosis did not have to end tragically. I, and they, were deeply involved in establishing ourselves as storytellers, and cultural chroniclers. I felt, should I be able to recover, my particular bout offered opportunities for a great long-lasting lesson, and example, for others who might follow behind. I couldn't locate a single prominent story - either factual or fictional - of a recovery from AML, and I thought there should be room for at least one.


Does this topic come up in your new book, It's Only Temporary?


Actually, it's one of the main thrusts of my first book, Time On Fire: My Comedy of Terrors. I was given (by my girlfriend at the time of that book's writing) a passage about "the revealing of the self," and how such revelations were part of the fuel that drove civilizations to evolve. About how the compilation of stories of all the members of the community were the lessons carried forward, and later used as roadmaps, by newer members of the society. The passage (From Sheldon B. Kopp's If You Meet the Buddha on the Road, Kill Him!) stated that "The paradoxical interstice of power and vulnerability, which makes man most human, rests on his knowing who he is right now, because he can remember who he has been, and because he knows who he hopes to become. All this comes from the wonder of his being able to tell his tale." These sentences, first encountered some time after my recovery, really altered the focus of my life for years afterward.


Of course, while the passage had a profound effect on me, my relationship with that girlfriend didn't endure - and neither did any of the others throughout my 20's and 30's. That's the topic covered in my newer book, It's Only Temporary.


Knowing the importance of funding cancer research, the fundraising objective behind Totally Baldacious, what observations do you have regarding the impact research has had on cancer treatments since you were first diagnosed?


My personal expertise in regard to cancer treatments now, as compared with those available when I was ill, is extremely limited. I know that many of the highly treacherous aspects of bone marrow transplantation I managed to overcome have been somewhat mitigated since, but that's about it. I do know I was exceptionally lucky to come down with acute myeloid leukemia in 1985, as opposed to 1965 (if you can call coming down with AML lucky at all; in Time On Fire I refer to myself as being among "the very luckiest of the unluckiest people to have ever lived"). I assume those who are diagnosed now, or twenty years from now, will have similar benefits, when compared with those treated when I was.


We know you have a web site (www.evanhandler.com), a Facebook Fan Page, and a Twitter profile (@evanhandler) -- and Totally Baldacious does too!  How has the web and social networking influenced your relationship with your fans?


My wife laughs at me as I spend several hours a week updating my Facebook page and corresponding with people there, or via Twitter. I opened the Facebook account to promote my latest book in 2008, and accepted all friendship requests. There are 5000 of them now, and my guess is that far less than 10% are people I actually know. So, I've certainly blurred the lines on the meaning of "friendship" and connectedness. But, really, the driving force in my storytelling is the same driving force I felt when fighting for my life. I had to come up with some concrete reasons why walking the hellish path of bone marrow transplantation might be worthwhile. There were personal goals, of course - like wanting to continue to be with my girlfriend at the time (that relationship didn't last either). But the overarching goal, that seemed larger than myself and my own tangled web of girlfriends past, present, and - hopefully - future, was the value that the story of my recovery could have. The inspirational value to others of my mere existence, should I be able to extend it. And, if you go to my website or my Facebook page that's what you'll find emphasized, as it's really the crux of what I think I have to offer.


We developed a 'Be Baldacious' widget that allows you to bald your social networking profile, which you probably aren't going to use. How will you be promoting Totally Baldacious online through February?


think I'm kind of promoting Totally Baldacious every day, everywhere I go. But I'm still encouraging all of my fans to sign up to fundraise for the life-saving cancer research LLS supports on www.totallybaldacious.org.


In the press release for Totally Baldacious you are quoted as saying that you are often mistaken for Howie Mandel? You're kidding, right?


I'm sorry to say I'm not.


Thank you for answering these questions, Evan!  We appreciate your spirited support!

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Still fundraising to meet his $50,000 goal, The Leukemia & Lymphoma Society President and CEO, John Walter, showed just how serious he was about showing solidarity with cancer patients by "shaving one for the team."

 

John notes: "The Totally Baldacious campaign is a personal way to demonstrate your support for cancer patients who lose their hair while undergoing treatment."

 

Check out the video here:

 


John's participation in Totally Baldacious inspired fans on our Totally Baldacious Fan Page on Facebook and caught the attention of online bloggers like Margart Battistelli, Fundraising Success founding editor. In  her blog, Outrageous Hope, she applauds John's commitment ending her post with  "we say to John, thank you for being so bold, so Baldacious, so willing to shave one for the team, and so, so full of outrageous hope!"


We couldn't agree more!

 

 

 

 

 

 

There's no better way to show you care than to go Totally Baldacious for cancer patients.

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One Voice Against Cancer ad

Thanks to cancer research efforts to date, 60 percent of all cancer deaths are now preventable. But today cancer still costs our nation 560,000 in lives lost and more than $228 billion in healthcare costs a year. And for many types of cancer, there are still no effective treatments.

 

Clearly, reducing cancer research funding for prevention and effective, less toxic treatments is unthinkable. At The Leukemia & Lymphoma Society (LLS), cancer research has been the top priority since our founding in 1949. That’s why LLS is a long-standing a member of One Voice Against Cancer (OVAC).

 

OVAC is a coalition of national nonprofit organizations representing millions of people in the United States who have this message for Congress and the White House: Increase cancer research funding NOW. We all know there is strength in numbers. Won’t you add your voice?

 

Join LLS and OVAC in making sure your elected officials hear and heed this critical message. What are we asking?

 

We are asking Congress to increase the 2011 budgets of the National Institutes of Health’s (NIH) by $4.2 billion (13.5 percent) and the National Cancer Institute’s (NCI) by $691 million (13.5 percent).

 

And we are asking you to advocate with us. Please visit LLS’s Legislative Action Center and urge your representatives to increase cancer research funding by sending the drafted email.

 

LLS and the other OVAC members have developed an ad that shows how more money for cancer research will benefit US health, not only physically but also economically. The ad is appearing in Capital area newspapers this week. You can download the ad from LLS’s website, then email or print and mail it to your representative’s office. You use LLS’s Legislative Search tool to find the office address.

 

Let’s speak with one voice now and give our legislators the clear message: Increase cancer research funding and save lives.

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On Saturday, we had our team walk scheduled. Well, with the weather bouncing just above freezing the last few days, we have been getting that wonderful Minnesota melt and re-freeze. So the path we were supposed to take was virtually a skating rink. There were huge, slick patches of ice all across the path. OMG!

 

I think we had gone a few hundred yards, maybe 1/4 mile or so, when our walk coach called a halt and had us all go out on the main road next to the path, for safety. Whoo! Things picked up from there, aside from the occassional traffic light stopping me from time to time. It was a straight 2-miles out and back, or 4.2 total miles on my GPS by the time we minced back through the icy-patched parking lot.

 

I'm a little bummed that I didn't start to track my mileage until our official training started, but oh well... As we go for longer walks each weekend and my weekday mileage picks up, it will be awesome to see those numbers add up!

 

Of course, I must add my public service announcement: Please, please, visit my Team in Training Website and make your donation!!! I would love to reach $500 in donations by March 1st. I can't do this without YOUR help!!!

 

Total miles walked this week to kick cancer: 12

 

Total miles walked so far: 20

 

In health,

Jenn

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2/24 UPDATE:

The Shavertown Totally Baldacious Event has been cancelled in consideration of the bad weather for forecast.

 

 

 

Next Saturday, February 27th, we'll be holding a Totally Baldacious rally, shaving or coloring hair for everyone who's interested in showing their love and solidarity for cancer patients.

 

The event is planned for 12 to 4 p.m. at Kingston Township Municipal Building, 180 East Center Street, Shavertown, PA 18708. We plan to have participants from local schools, colleges, and busnesses and just people from the community attend. We will have several hair stylists on hand to assist with the shaving and temporary hair color.    Our Honored hero is Shavertown resident, Hunter Wesolowski, 6, a CML survivor.

 

Be a part of the fight against cancer and brave This Totally Baldacious event in Shavertown. Email baldacious@lls.org to confirm your participation so we can plan accordingly.  There's no better way to show cancer patients you care next Saturday.

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I have to confess, I am feeling a little "blah" today. I want this blog to chronicle my journey and give me something to look back upon when this is all finished and I've raised the money and completed my marathon. To that end, I think I must be honest about my feelings and not just try to be sunshine and roses all the time. Those of you that know me are probably laughing right now. "Jenn, all sunshine and roses??? Hahahahahaha." Funny. Just, go with it.

 

I think it started after our group walk on Weds. I was feeling pretty good after finishing the 2.8-mile trek around the Lake. A few spots were icy, and it was hard to see in the dark, but I was surprised to find we had reached our destination! There I was, all endorphin-happy, until I got to my car and saw the parking ticket stuck to the windshield.

 

Yes, in my haste to find the meeting spot in the dark, in a location I'd never been before, and running late, I had overlooked the fact that this was, in fact, a PAY lot. Oh joy. So the one or two bucks it would have cost me to park there turned into a $40 ticket. Yes, $40. Ouch!

 

Second, and I am being really honest here (so shoot me!)… I think I am a little bummed out about my fundraising. Or more to the point, the lack of donations. I was hoping the Team in Training duffle bag would be a cool incentive. I mean, I'd want one! And no, I haven't bought one for myself. *sigh*

 

Everyone is saying the donations will come, that it's early yet and to not get discouraged. I guess I'm hoping you all don't wait until the last second for that contribution! (Um, hint, hint?) Please, visit my website and donate!!!

 

At any rate, our next team walk is tomorrow. I am looking forward to seeing everyone again and the challenge of 4 miles. I challenge YOU, my reader, to donate and help me in my goals to kick cancer!

 

In health,
Jenn

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Earlier this month we let you know about the launch of a new fundraising campaign, Totally Baldacious, which was designed specifically to show love and solidarity for cancer patients while raising money for life-saving research. The response to this campaign has been terrific, thanks in great part to many of you who've posted comments on the Totally Baldacious Fan Page on Facebook, like this one:


"My son and daughter both shaved their heads in support of their sister after her diagnosis of AML in 2003 which scared their three-year-old niece (worried she'd have to do it too!). We all laugh about it now and the sense of support was so strong! She is 6 years past transplant now and has a huge head of hair! Love this campaign. Love in action!" --Lori Robin Wilson

 

Showing our love is what it's all about and our President and CEO, John Walter, is leading the charge! Last week our John announced his participation in the campaign -- with a bold fundraising goal of $50,000!  (Note: As of 2/25 John is 33% of the way there.)

 

You can help John reach his goal by donating to his campaign today!  Donate to show your solidarity with those currently undergoing treatment.

 

Your contribution will promote advances in treatment that will allow cancer patients to live better, longer lives.   Then visit the @LLS Blog on the 24th to see pics and a video of John 'shaving one for the team.'

 

Show your baldacious support by making a contribution today

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showLargeThumb.ashxCompleting a triathlon is a great feat.  A triathlon is a multi-sport endurance event consisting of swimming, cycling, and running.  Team In Training's triathlon program offers the opportunity to take on the exciting challenge of training of and completing an Olympic-distance triathlon.

 

The Team In Training program is a one-of-a-kind, one-to-one training program that will teach you all you need to know about getting your body and mind in peak performance to take on an endurance event.  Along with a customized-training program and expert coaching, participants will train with a local group of like-minded individuals for motivation and inspiration.

 

Right now, Team In Training is recruiting participants for the following amazing events:

 

  • Capital of Texas Triathlon - May 31, 2010
  • Visit downtown Austin for this inspiring event which attracts not only first timers, relay-ers and age groupers, but also Professional triathletes from around the globe. It's one of the most exciting and spectator- friendly races in the country!

  • South Maui Triathlon - June 13, 2010
    The Inaugural South Maui Triathlon at Wailea will take place on the island of Maui in beautiful Wailea.  This very safe and beautiful Olympic Distance triathlon course is great for spectator viewing. The transition area will be housed on the beautiful Wailea Beach Marriott Resort and Spa Luau grounds.  Whether this is your first triathlon or your 5th, this amazing event is one you don't want to miss.
  • Philadelphia Insurance Triathlon - June 27, 2010
    This course will travel through some of the most historic and picturesque sections of the city.  The start/finish and transition areas are located just off of West River Drive, near the base of Black Road. It's a beautiful part of Fairmount Park, complete with statues, trees and grassy fields.

 

In addition to these national events, many local Team In Training groups are training for triathlons in their hometowns.    Fill out our online Tell Me More form to find out the triathlons offered by your local chapter.

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Jadrian, you're currently undergoing treatment, but you didn't lose your hair. Why did you decide to go Totally Baldacious?

When I was diagnosed with CML, I didn't know what to think. The whole process was pretty scary, but as I learned more about my treatment and prognosis, I knew I was one of the lucky ones. There are so many other people who are dealing with cancers or treatments and not responding nearly as well. If shaving my hair helps to raise awareness and money for cancer research and treatment, it's a small price to pay. I hope my story and experience inspire others to help as well.

 

Are you shaving your head for anyone in particular?

A friend of mine, who was diagnosed with CML shortly after I was, has not responded to the same treatment that works for me, and is facing a bone marrow transplant very soon. This is one small way that I can walk beside him and lend him strength on his own journey forward. My dad fought and won his battle with colon cancer a few years ago, and his strength and character throughout my life are also of unending inspiration to me.


How important has the support and solidarity you've received meant to you during your treatment?

It is invaluable. Knowing my friends and family are there with me every step of the way means the world to me. The community of fellow survivors online welcomed me warmly, and the forums provided me with a platform for educating myself about leukemia, its treatment, and new advances.

 

We have a number of support resources available online -- from the Blood Cancer Discussion Boards to online chats. Have you taken advantage of any of these resources?

I delved deep into the community knowledgebase in the online discussion boards immediately following my diagnosis, and am grateful for the outpouring of news and support from its members.

 

What LLS resource have you found the most helpful?

For me, the discussion boards have been the most helpful.

 

You've filmed your hair being shaved! (View Jadrian's video here above).  What a great video! How else are you promoting your participation in Totally Baldacious online?

Via Facebook and Twitter, of course, as well as on the community pages for the LLS   and the Totally Baldacious campaign itself! I'm excited to see response videos on YouTube of other people around the world going Totally Baldacious as well, so if you've got 'em, post 'em!


It's clear this year's Valentine's Day is one you won't soon forget.  Thanks for going Totally Baldacious, Jadrian, and helping emphasize how important it is to show solidarity and support for all cancer patients!

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T315I Mutation in komgirl's Blog

Posted by komgirl Feb 17, 2010

Hi - This is my first attempt at blogging - so here goes.  My husband was diagnosed with CML in May of 2008, he was put on Gleevec, and with adjustments in dosage responded very well to it.  Unfortunately, in November of 2009 we were told that he had escaped the medication.  Within that time, we went off of the fellow's rotation and were assigned to the Chief of Onc. at the hospital where they orignially treated him.  This onc is VERY busy, and we never felt like that John was sick enough for him to give his full attention too.  He was put on Dasatinib in December of 09'; in January we decided to seek a 2nd opinion so we headed up to Memorial Sloan Kettering to met with the director of hematology.  We decided to switch providers and now travel to NYC for care. Yesterday we were told that John has failed Dasatinib and that he has the T315I mutation.  So back on hydroxyurea and allipurniol while we wait for approval to enter in a clinical study (not sure of the details yet) to suppress the T315I.  We were also told that we need to get him back in remission, as he will need some type of transplant.  John's been typed, as well as his sister, but not sure if they can use her or not. So just when we were finally learning to live with CML, and trust the medication, back on the roller coaster ride to get him healthy again. I've read some posts about the Ariad study and will discuss that this Friday with his hematologist. Is there anything else out there?

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Recording artist, legendary Las Vegas performer and acute myelogenous leukemia survivor Kristine W is going Totally Baldacious! Totally Baldacious.


Kristine, your last album was 'The Power of Music' -- tell us about the power of showing your love for cancer patients. How important was your support network when you were undergoing treatment?

Having emotional support Is critical. I did not tell my fans or even many of my friends about my illness because I didn't want to sent a wave of panic out there before I knew what I was dealing with . I was driven to UCLA because I was too weak to walk across the airport to get on a plane and my white count was so low I could have died from catching a cold. I was given a bone marrow biopsy and admitted immediately upon arrival.  I would have loved to have been able to talk to someone about what was happening but It all happens  very fast. The first 6 weeks I was so sick I don't remember much. During my months of treatments at UCLA, I was put In touch with the LLS  and then The  First Connection program. Talking with other survivors really helped me become  more confident In my fight.  Looking back, I wish I had know about the program earlier In my treatment. I am so grateful we have the LLS.

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You're hair is a big part of your image, did you lose your hair?

I lost my hair 3 times during different rounds of chemo over the period of a year and It was very traumatic . Before the first round I had a hairdresser come to my hospital room and cut my long hair  very short so It would not be so hard on my ego to lose it. It all fell out in clumps very quickly anyway after I started treatment. I remember laughing to my friends and family and crying only when I was alone.   The third time my hair grew back It was a very slow process and I had to use double stick tape to keep my wigs on my bald head for my shows. Roberto Novo, a dear friend of mine and Salon owner In NYC  designed these cool rhinestoned beanies I wore which actually started a fashion trend.       

 

Did anyone shave their head to show their solidarity for you?

Yes, Roberto Novo shaved his head and flew in when I did my first show in Kansas City after my illness. He helped me with my wigs backstage because he knew I was freaked out about my no hair situation. With no hair there Is nothing to attach a wig to.  I was petrified my wig would fly off  into the audience because I really move around on stage.  LOL      

 

How would you have felt if they did?

I would have been totally awe struck just like when I saw Roberto!!

 

Kristine, you've been a long-time supporter of The Leukemia & Lymphoma Society. Thank you for all you've done for LLS and for your baldacious support of this campaign!

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2/23 UPDATE:

Victory in Iowa! Thirty-one states and the District of Columbia now require insurance companies to cover routine care costs for patients enrolled in a cancer clinical trial!  Today, Tuesday, February 23, blood cancer volunteers from The Leukemia & Lymphoma Society’s Iowa Chapter witnessed Iowa Governor Chet Culver sign House File 2075 into law, officially requiring this coverage for cancer patients in Iowa.  The Leukemia & Lymphoma Society would like to thank the bill’s champions, Reps. Janet Peterson, Tyler Olson and Doug Struyk and Sen. Joe Bolkcom, and Gov. Culver for their support of this vital issue!

 

Today, Wednesday, February 17, blood cancer volunteers from The Leukemia & Lymphoma Society’s Iowa chapter will travel to Des Moines and thank their elected officials for passing legislation that will require insurers in Iowa to cover routine care costs for patients enrolled in a clinical trial.  Volunteers will also be presenting our champions – Reps. Janet Peterson, Tyler Olson and Doug Struyk and Sen. Joe Bolkcom – with awards thanking them for their support of this bill.  But just because you were not able to make the trip to the Capitol building doesn’t mean you can’t still join in the excitement of Iowa’s State Mission Day!

 

For Iowans, there are two ways that you can still participate in the day: 1) Please visit LLS’s Legislative Action Center and send a pre-drafted email to your representatives thanking them for passing House File 2075 unanimously in both the Iowa House and Senate, and 2) you can follow the day online. We will be posting updates, volunteer feedback, photos and video right here on the @LLS Blog and through LLS pages on Facebook, Twitter and Flickr.

 

So check in from time-to-time and be a part of Iowa’s 2010 State Mission Day!

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http://community.lls.org/servlet/JiveServlet/downloadImage/38-1653-5296/baldacious_logo.jpgShow your love and solidarity for cancer patients by promoting Totally Baldacious through your social networks. Whether you fundraise with a Totally Baldacious challenge, donate to support life-saving cancer research or just choose to Totally Baldacious your profile picture --- you'll be making a difference in the lives of cancer patients.

Update your profile image with the Be Baldacious widget or Facebook Application and spread the word about the importance of funding life-saving cancer research.
    
Be Baldacious, pictured below, lets you go bald - virtually.  Just upload your photo, size and position it under the bald cap, match your skin tone, and then share it with your friends.  Dare them to go Totally Baldacious, too!

There's no better way to show you care.

 

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We did our first Team walk this weekend. It was my first foray into endurance athletics in sub-freezing weather, and let me tell you, it was COLD! I think it was 7 degrees (that's Farenheit here in MN, for you C folks it's -13), and warmed up to about 9 by the end of the walk.

 

The first mile, I was half-numb, my ski mask, hat, gloves all firmly tucked and still feeling the chill. My shoes have that mesh top, and even encased in SmartWool socks, my poor little toes were very cold.

 

By the second mile, the ski mask came off and my fingers peeped out of my gloves (I have the kind with the fingers cut off and the mitten that goes over the top).

 

After two miles, I was in full swing, no hat or gloves, and feeling no cold. I was starting to get a little tired, however. I was happy to see the end of the walk, I must confess. Three miles has been about my limit with my recent fatigue issues, which I am hoping to be able to push past this coming weekend.

 

Had a lovely time walking with my teammates. Our walk coach, Susan, is amazing. She checked in on each of us during the 3-mile trek around Lake Calhoun, and made me feel like nothing was impossible. I can't say enough about how awesome she is!!!

 

Monday, a nice 3-mile stroll at the gym. Tuesday, Thursday, some cross training. Weds. will be another group walk, 4 miles this time. It might be a little different, walking in the evening. I sure hope the weather holds and it doesn't get icy.

 

I'd be remiss if I didn't add a reminder to please, visit my Team in Training fundraising website, and make a donation today! I would really love to hit $500 by the end of February, and anyone making a donation of $50 or more is entered in a drawing to win a Team in Training duffle bag!!!

 

Miles logged last week to kick cancer: 8

 

In health,

Jennifer

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ttp://www.totallybaldacious.org

http://community.lls.org/servlet/JiveServlet/downloadImage/38-1653-5296/baldacious_logo.jpgToday at John Allan's in Midtown Manhattan, 12 year NFL veteran Terry Cousin and his pro football colleagues Sheldon Brown and Jyles Tucker will be going Totally Baldacious to show their solidarity for cancer patients and to raise awareness about the importance of funding life-saving cancer research.

Each have registered on www.totallybaldacious.org, where you can donate or use the Be Baldacious widget to share with your friends. Whether you decide to fundraise for Totally Baldacious, donate, or promote the campaign, you'll be making a difference in the lives of cancer patients.

 

Updated:

 

The before picture: Check out Cousin, Brown and Tucker in front of John Allan's Salon in NYC!

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And here's the 'after' shot:

 

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For a complete series of pics -- see the Totally Baldacious Fan Page on Facebook!

 

Be inspired by Terry and his Team, sign up to fundraise at www.totallybaldacious.org, donate to fund life-saving cancer research or just use the Be Baldacious widget/Facebook App to help raise awareness about this important campaign. Do something Totally Baldacious today - you'll be glad you did!

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     Mother Nature brought about a storm this past Wednesday.  I didn't have to drive in to work so I was going to go to the gym and get my run in before the Nor' Easter got bad in the afternoon.  To my surprise the gym was closed for the day.  It turned out we didn't get as much snow as expected so that wasn't cool.  I could have sworn gyms stay open no matter what so that when clients can't make it to personal training sessions... they still have to pay.  Oh well.  I missed both runs that day and was pretty upset.

 

     I couldn't make it to the gym Thursday morning because it took awhile to dig my car out of the snow and clean it off.  I missed my great half hour wake up run... its all good though.  I made it to the gym after work and had a great 20 minute ab workout before I started my 2 hour run.  I ended up running an hour and 53 minutes.. and did 11.4 miles.  Still have a little bit of a runny nose... so I see why my performance is down right now.  My body is still fighting the cold.  I had a great tricep and bicep workout.  Who would have thought that after 3 weeks of lifting a muscle a day... I would be able to dip my weight plus an extra 55 lbs 6 times on the 3 set. I didn't. All around great workout.

 

     Today I was up before 6 and running on the treadmill.  I put in 2.42 miles in 30 minutes.  This is how I left off before I got sick... so maybe my body is done battling the cold!!  We'll see tonight If I can run over 7 miles in an hour and keep my heart rate in the aerobic zone.  Then the fun begins! Not sure if I'll do the 2 and a half hour run Saturday or Sunday... but it will be my longest time on the treadmill!  Let's Get It!

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http://community.lls.org/servlet/JiveServlet/downloadImage/38-1653-5296/baldacious_logo.jpgIt's happening today at 2pm, EST -- 12 year NFL veteran Terry Cousin has pulled together a team (including the Philadephia Eagle's Sheldon Brown and the San Diego Charger's Jyles Tucker) who are going Totally Baldacious to show their solidarity with cancer patients, as they call attention to the need to fund life-saving cancer research. Cousin, Brown and Tucker are all either shaving our coloring their hair at John Allan's, the sophisticated men's salon at 46 East 46th Street in Midtown Manhattan.


We'll be posting about this event on this Blog throughout the day. You can also follow us @baldacious on Twitter.


Terry's Team is gong Totally Baldacious -- how about you?!

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