Heather's Hangout

Sharing the people, places & little moments that make a difference.

Getting involved in cancer advocacy August 8, 2017

ACS HOPE lobby day

Hope makes everything worth fighting for. (ACS CAN Lights of Hope ceremony in DC)

After spending a week biking across Iowa with Team LIVESTRONG, raising funds and awareness for their programs and services for people facing cancer, I’m even more ready to work to improve healthcare, increase funding for cancer research and better treatment options, and support people affected by this crappy disease. And the sad thing about this disease’s impact is that there is much more to do. More than 1.7 million people will be diagnosed with cancer this year. It’s estimated more than 600,000 Americans will die from the disease. Too many. Unacceptable.

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I’m honored to recently be ‘promoted’ in my volunteer role with the American Cancer Society Cancer Action Network to the team lead for my Congressional District. This means that I will be working more closely with our local, state and federal elected officials and their staff. To me, it means that I can help make a more positive difference in the lives of people facing cancer. I’ve enjoyed meeting with the local staff in our district and speaking about ACS CAN at local events. Healthcare is ever-changing today and there never seems to be an end to the work!

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I’m really excited that I will be joining ACS CAN in Washington, DC in September. Hundreds of advocates will come together to meet with our home state federal officials to ensure cancer research, funding, preventive programs and more remain priorities for Congress. The highlight of the trip will be the Lights of Hope ceremony on the steps of the Lincoln Memorial. Here, more than 24,000 luminary bags will be lit to spell HOPE, a truly symbolic moment in our fight against cancer. Hope is something that I hold deep in my heart for every aspect of life. The luminary bags represent thousands of the cancer survivors and those we lost to cancer (Each bag is only $10. If you’d like to purchase a bag in honor or memory of someone special touched by cancer, click here.).

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There are many ways for you to get involved in cancer advocacy. It’s as easy as advocating from your home if you want! Sending emails, posting to social media, writing letters to the editors and calling your representatives is easy and makes an important impact. If you think your voice doesn’t make a difference, think otherwise. ACS CAN advocates had the following impact on Congress’ attempts to repeal the Affordable Care Act without a reasonable replacement (since Jan. 2017):

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–128,000 petition signatures/messages sent to members of Congress
–20,000 new ACS CAN member volunteers registered
–The #keepuscovered hashtag was used 16,000 times on social media (mostly Twitter), earning a reach of more than 42 million.
–30,000 calls were made to Hill offices (since February)

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That’s quite an impact volunteers made on important issues! I encourage you to get involved in making a difference in the fight for better healthcare for everyone. Here are some organizations that are active in cancer advocacy and that I have experience with:

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American Cancer Society Cancer Action Network. I believe that ACS CAN is one of the leading organizations advocating on behalf of people touched by cancer. Their influence is far-reaching and makes a positive impact (read the few stats above). There are many opportunities to work for positive change in your state by becoming an ambassador member.

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LIVESTRONG. Many of the national cancer priorities are also priorities for LIVESTRONG’s advocacy work. Pushing for an increase in cancer research funding and stopping the repeal of the Affordable Care Act are recent actions. I attended the One Voice Against Cancer lobby day the past two years with LIVESTRONG, which was an amazing experience, and made a difference in cancer care.

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National Coalition for Cancer Survivorship. NCCS works to improve quality of care and quality of life for anyone diagnosed with cancer. The organization advocates for better cancer care, improved research on new treatment options, and self-advocacy.

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Cancer Support Community. This organization formed years ago when The Wellness Community and Gilda’s Club merged. CSC offers social and emotional support for people facing cancer, caregivers and more. The policy work of CSC often focuses on ensuring that emotional support is an essential part of treatment for the patient, family members and caregivers.

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Cancer specific organizations. There are a lot of advocacy groups focused on specific cancer. For instance, I follow news from the Sarcoma Foundation of America as it focuses on bone cancers and get involved when needed. This organization works to advocate for increased funding for sarcoma-related research and treatments, as well as educate patients and the public on sarcoma. As a bone cancer survivor, these issues are obviously near and dear to my heart.

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All of these organizations distribute electronic updates and advocacy alerts. At the very least, I encourage you to register to get informed on what’s happening in policy related to cancer. Positive change begins with one person. You can be that person!

 

Favorite memories of biking in Iowa (RAGBRAI) August 3, 2017

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Dipping in the Mississippi River

I made it back to Michigan after a week in Iowa with Team LIVESTRONG. Three loads of clean laundry are ready to be put away. My tent and sleeping bag are aired out and clean. My bike received some TLC. My friends are all at their respective homes. I returned to work yesterday (at least physically; I’m still mentally adjusting). After a week of biking in Iowa with friends at the Register’s Annual Great Bicycle Ride Across Iowa (RAGBRAI), raising awareness and money for LIVESTRONG’s programs and services for people facing cancer, decompressing from the real world, and achieving a personal goal as a cancer survivor….well, I’m ready for more biking adventures. Or adventures in general.

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While last year was fun being on the support team, it’s true that you don’t really understand RAGBAI until you bike it. My friend told me so many stories from on the route, and I saw picture after picture of fun that I was hooked before I left last year. But I didn’t ‘get’ RAGBRAI until I got on my bike and joined thousands of other cyclists on the route from Orange City to Harper’s Ferry.

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There was a lot to experience and enjoy during the week. Admittedly, it doesn’t usually take much for me to enjoy any adventure that I’m on. I love the excitement of being in new places, trying new activities, food and more, meeting new people, making new memories. I’m a fairly ‘go with the flow’ person, especially on vacation. But I knew this would be a special week. Not only was I attempting to ride my bike many miles in Iowa, raising money for LIVESTRONG’s programs and services, and hanging out with friends, it was also a recognition (personal goal) of 20 years since my bone cancer diagnosis. I needed to show myself that I could accomplish what I set my mind to, titanium rod in my leg and all. While I was nervous driving into the week, there was no doubt that I was going to open myself, my heart, to making the most of this special week.

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I enjoyed so much during the week. Here are just a few of my favorite experiences:

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Love biking with these girls

Spending time with friends. My teammates live around the country so we don’t see each other as often as we’d like. I was excited to spend the week with some of my great friends, and have the opportunity to make new friends. No matter where I was, riding my bike, eating lunch, standing in line for the shower, riding in the RV to the next campsite, driving to Iowa, there were great conversations to be shared. I reinforced special bonds with current friends, and discovered kindred spirits in new friends.

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Riding my bike. Is it funny to admit that I love my bike? I love the freedom and power I feel riding mile after mile. Knowing my legs and my body, which survived some torturous chemo to kill cancer, is strong enough to bike mile after mile. Sometimes I marvel that it took me so long to purchase a road bike, but maybe it was never the right time until the time that I did buy it. I loved biking through Iowa, enjoying the scenery and towns from the freedom of my bike (although I started deeply sighing at the sight of the large wind turbines, which typically meant a lot of wind to bike through/at)! I gained so much confidence as a cyclist by the end of the week (shucks, I can now even stay clipped in and not look down to remove/replace my water bottle. Don’t laugh, I had to work at trusting my balance for this achievement!).

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Welcoming communities. One of my favorite experiences was exploring the small towns along the route. What a way to see Iowa! Some of the towns had banners, bands and community members waving and cheering as the cyclists approached the towns. Many children set up lemonade stands along the road (I stopped at one on Thursday – the little girls were so adorably excited!). The overnight towns hosted entertainment, food and drink vendors, games, and more. Imagine being a small town, with a very small population, that suddenly has an influx of thousands of bikers, tents, RVs, shower trucks, vendors and more! I fell in love with these small towns. So very different from the busy suburbs of metro Detroit.

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Enjoying life. There were some definite emotional ups and downs during the week that brought tears, but overall I laughed a lot. My teammates are funny with the stories and antics we shared. The sun shone most days. My body felt awesome riding my bike. How can you not laugh? I loved the moments of sharing stories with teammates and others along the route. I loved the impromptu whiffle ball game (where I discovered an almost embarrassing competitive side to myself – except I think I laugh too much to be considered serious competitive). I felt healthy, free, relaxed and alive.

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Beautiful camping spot

Meeting new people from all across the world, from all walks of life. I met a doctor, farmer, college student, fellow marketing colleague, teacher, chef, retirees, and bum traveling around the country (that’s how he described himself!). While the average RAGBRAI participant’s age is 46, I saw young, old and in between on bikes. I even saw a dog riding in a basket and Batman.

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Stopping along the route. There are many opportunities to stop along the route for a rest, food or drinks. Back Pocket is a popular ‘watering’ hole to enjoy Iowa craft beer. The ‘pass through’ towns are full of vendors selling food, drinks and merchandise. The meeting town (half way point) is packed with entertainment, food, drinks, merchandise, games and more. These are the best places to people watch, meet up with other teammates and soak up the moments of RAGBRAI.

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Helping others. Team LIVESTRONG is at the event to raise awareness of and funds for the nonprofit’s programs and services that support people affected by cancer. Our team raised $145,000 (you can still donate!). Throughout the week, I had wonderful opportunities to share information on LIVESTRONG, listen to others’ cancer stories and share my own, and my dad’s, to help others. Every moment was inspiring and motivating. I always come home from these events wondering how else I can help others in their journey with cancer. There is still so much to be done; I’m grateful I can help where I can.

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The week could not have closed in a more special way. At the end of our journey, standing together at the Mississippi River, one of my teammates asked some of us to stick around. When she approached me and took my hand, she asked me if I’d help Terry share our adventure. Terry is her husband who died from cancer. As she sprinkled his ashes in my hand, my heart immediately warmed at the honor of sharing this moment with her, and him (and of course I cried at the honor being part of a beautiful moment). As a small group, we stood together on the dock and sprinkled the ashes into the Mississippi River and across the soft breeze. As I looked at these special people, and at the great river flowing beside me, as I heard laughter and yells of accomplishment from others dipping their bikes in the river, I was reminded again of how precious life is, and how grateful I am to be alive to enjoy it.

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So, my friends, spend your days being happy. Sometimes we must make tough decisions to find that happiness. Sometimes we have to struggle first to then find our peace and contentment. Sometimes we have to look in the opposite direction to find the path we are supposed to walk. Life is full of adventures. I’m ready for the next one.

 

Lessons learned biking across Iowa (on RAGBRAI) August 1, 2017

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I made it to the Mississippi River!

I did it. I made it across Iowa. I biked 200+ miles, raised money to support people facing cancer, and achieved a personal goal while acknowledging 20 years since my cancer diagnosis.

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If you follow my blog, you know that I’ve been training all spring (okay, more like the past year!) to join Team LIVESTRONG at the Register’s Annual Great Bicycle Ride Across Iowa (RAGBRAI) to raise funds for and awareness of LIVESTRONG’s programs and services for people affected by cancer. I did this in part to honor 20 years from my bone cancer diagnosis and in memory of my dad who always believed in helping others before cancer took him from us. It was a special way to help others facing the disease that forever changed my family. And I did it.

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When I decided to join Team LIVESTRONG on RAGBRAI, I’m not sure I really understood what I was getting into (ha, always a good reason to throw yourself into something!). A friend wanted me to ride last year so I decided to help the support team/staff last year for a few days to get an idea of the event, but I didn’t ride. By the end of that week, I was inspired enough to go home, buy a bike and train for the hundreds of miles I planned to attempt (read that blog). And train I did (with many thanks to friends who shared endless tips/insight into cycling, rode with me or encouraged my crazy idea). I admit that I was ridiculously nervous in the days leading up to the event. I guess I doubted my ability to bike so many miles with the titanium rod in my leg (I seriously need to stop doubting myself. I’m starting to annoy myself.). Guess what? I did what I set out to do.

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If it’s possible to say you’re proud of yourself without sounding stuck on yourself, then I’ll say it. I trained hard, absorbed as many tips and tricks as I could, asked a zillion questions (sorry and thank you to my coach), read blogs, watched videos, mentally and physically prepared, raised funds for LIVESTRONG’s programs and services. While I wanted to ride the entire 400+ miles of the 7-day event, I took my surgeon’s advice and rested in between the biking days, achieving almost 200 miles. I felt physically awesome after each day. My leg started bugging me as the week wore on, but I’m convinced that it’s from sleeping on the ground in my tent (a perfect reason to invest in a thicker sleeping pad) rather than biking (and I feel fine now). I learned enough to be even better next year (eek, did I just type NEXT YEAR?).

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The week brought many high moments and some lows (a very dear friend had a health

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So fun being on a bike!

issue on the bike, causing him to fall and be injured. He thankfully will recover but it caused some terrifying moments of worry). I learned SO many things about me, other people, biking, Iowa, and life. Enough to fill half my new journal while in Iowa and inspire multiple blogs (if I had the energy to write that much at this time)! For now, I’ll share just a few lessons with you.

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There are some really good people around me: I’ve shared in the past about the awesome camaraderie and kindness of my LIVESTRONG friends. As much as cancer sucks, it is a common bond that ties many of us together. From the other RAGBRAI newbies to the multi-year veterans, I shared many laughs, hugs, tears, drinks, jokes, smoothies, dances and, of course, miles on the bike with my 70+ teammates. They pushed, pulled, encouraged, cheered and supported me. I have deeper bonds with those who started as friends, and many new friends. And outside of the team, I was surrounded by thousands of other cyclists. As I waited 30 minutes in line for a shower, I had a wonderful conversation with a mother and daughter who I ironically rode beside me for a few miles earlier in the day. They recognized my Michigan Awesome jersey and tribute cards. It was a great opportunity to share LIVESTRONG’s programs and services, and simply get to know two friendly women. I thought it a little weird when a man randomly commented on my ‘beautiful scar’ running along my femur, only to learn his wife is a also a bone cancer survivor and he was going to tell her of my accomplishment on the bike to motivate her to stay strong. There was the young woman who brought me to tears and shared a hug as she talked about her dad also dying from multiple myeloma. And the many others who told stories of how LIVESTRONG’s programs and services helped them or others. These stories, these moments, filled me so much with motivation, joy, appreciation and sadness (that this disease still affects too many).

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I’m stronger – mentally, physically and emotionally – than I give myself credit for. This week taught me that I need to believe in myself more. I admit that I was ready to throw up that first morning as we pedaled out of the campsite. But a few miles in, I found myself smiling at friends as we shared the beautiful morning on our bikes, and a few miles later, I settled in as we rolled along the road, and a few miles later, I laughed aloud at the pure joy of being on my bike. As the week progressed and I biked more miles, helped take care of my friend, laughed until my stomach hurt, cried, listened, shared, hugged and simply felt myself be in the moment, I realized that I may never have all the answers to life, but I’m doing a pretty good managing it right now.

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Sunrise on the runway.

We live in a beautiful country. When I told people that I was joining LIVESTRONG to bike across Iowa, many people replied, “You’re spending your vacation in Iowa? In the July heat?” Well, yes. I’ve come to love Iowa. As we moved east across the state, the land started to roll into hills and the scenery turned even prettier. I was in awe of our campsite in Waukon on the last night as we were tucked at the end of a runway at the municipal airport overlooking farms filled with soybeans, corn and cows. The sunset’s colors streaming across the skyline made my breath catch and the glorious night sky filled with stars brought tears to my eyes as I thought how incredibly fortunate I am to be alive to experience this magic.

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Life is short, so don’t waste it. When you or someone close to you endures something serious, it makes you hit pause on life for a few moments (or it should). You can’t help but be reminded that life is precious. As cliché as it is, it’s true that we only get one life. Don’t settle for less. Twenty years ago, I had that reminder slapped in my face when I was diagnosed with cancer. Thirteen years ago when my dad died from cancer, it struck me again. There’s been many other moments throughout life to reinforce that thought. It’s why I search for happiness in all I do; why I left an unhappy situation to seek true love and joy; I explore places away from home to meet new people and experiences; I try not to hesitate to share how I feel; I push myself to be a better and stronger person;  I embrace new adventures and opportunities, I try to laugh and soak in the joy of life.

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Sometimes you have to throw caution, responsibility, worry and fear into the

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My fun bike, Ruby.

cornfield and ride your bike. Despite being nervous about riding the first day, I knew that I would be okay once I got on my bike. I trained on this bike, I fit so well on this bike and I truly love riding this bike. There is something about being on the bike that eases every pressure in my body and mind. It’s a freedom that’s hard to describe, especially as a bone cancer survivor. When my femur was replaced with a titanium, I gave up a lot of freedom. I can’t ride my beloved horses, run, play tennis, volleyball nor many of the activities that I once enjoyed. I think of this rod in my leg from the moment I get out of bed to the moment I lay back down. Don’t get me wrong – I am forever grateful to have my leg because there is an alternative. I never want to hurt my leg, but I need freedom. And riding my bike gives me that. Very little beats the moments when you feel the wind tickle your skin, the sun warm your face (while wearing sunscreen) and the power of your body moving with the bike. You have to soak in the scenery, breathe in the air and think of nothing but what’s around you.

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It’s easy to make a difference in the lives of others. More than 70 people came together to bike across Iowa to raise awareness of and money for programs that support people facing cancer. So many of my teammates have their own stories of cancer in their lives, and also had stories of sharing LIVESTRONG with others as they biked the route. It takes one person to make a difference. Together, we raised more than $140,000 for these programs and services (thanks also to many of you who donated to our cause).

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As fun as this trip was, and as proud as I am of myself, the point of this trip was, of course, more than my story. It was about coming together as a team for LIVESTRONG, for people affected by cancer, raising money for programs and services that support thousands of people fighting this terrible disease, sharing stories and information to ensure we are all one in the fight. And it was a heck of a lot fun being able to help others.

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There’s still time to donate to our LIVESTRONG team’s fundraising efforts to help more people facing cancer. Click here to donate.

 

8 reasons I’m excited to bike across Iowa July 12, 2017

HH_bikeLS52017The countdown for leaving for RAGBRAI to join LIVESTRONG in Iowa is quickly getting smaller as the “BIG day” is almost here (eek!). Some days, I can’t wait for the adventure to begin. Other days…..yeah, well, other days I admit I practice my breathing exercises to remain calm. It’s a lot of darn miles to ride on a bike. But I’ve been riding, a LOT. My leg and knee have, thankfully, felt amazing, and my butt, well, it’s getting there (yep, padded shorts and chamois cream are my best friends).

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This ride will be worth the anxiety and nerves. Because at the end of the day, Team LIVESTRONG is raising a lot of money – more than $120,000 so far! (you can help increase that total by donating here) – for programs and services that support people affected by cancer. And I’m personally excited to prove to myself that a thing like bone cancer causing my femur to be replaced with titanium can’t stop me from biking a few hundred miles to help other cancer survivors. (You can read more about why I’m biking across Iowa in this past blog post)

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As the “BIG day” approaches, there are many aspects of RAGBRAI that I’m excited to experience. Here’s a few things that keep me motivated:

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Raising funds for and awareness of LIVESTRONG’s mission, programs and services – LIVESTRONG offers some outstanding programs for cancer survivors, caregivers and people touched by disease. Whether newly diagnosed or out of treatment, the organization provides support at every point of your journey. From direct services to community programs to school programs and more, I’m grateful to know there is so much available to help others. If you haven’t read their manifesto, you should. These words are so powerful to me – “We believe in life. Your life. We believe in living every minute of it with every ounce of your being. And that you must not let cancer take control of it…..Unity is strength. Knowledge is power. Attitude is everything.” I was stopped in the airport a few months ago by a woman who noticed my LIVESTRONG shirt and yellow wristband and wanted to share how useful the guidebook and journal were during her cancer journey. I love hearing these stories and am happy to be a part of the organization as a volunteer.

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Team LIVESTRONG (aka “my tribe”) – I’m most excited to hang out with this team, my team, my friends, my yellow family. We all start with the common bond of this terrible disease, as cancer survivors, caregivers, family members and friends of cancer survivors, family members and friends who have lost someone to cancer. It doesn’t matter what circumstance brought us together, we have a bond. In addition to this bond that ties us together, these are good people who find many ways to fight against the disease. They commit to spending a week on a bike, raising money for LIVESTRONG’s programs to support others. So no one has to face cancer alone. I’m already in awe of them, and humbled and honored to be part of their team.

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The people I ride for – While there is never a day that goes by that I don’t think of being a cancer survivor in some way, there is also never a day that goes by that I don’t think of the many other people who are also cancer survivors or died from this disease. My dad is always in the forefront of my mind, as I miss him daily. I’ve said good bye to too many people because of this disease, many of them way too young (since I was diagnosed at 21 and treated in pediatrics). I’ve also been blessed to have met thousands of cancer survivors in the past 20 years, all of whom reinforce that our fight against this disease is far from over. So throughout that week, and always, these people will be in my heart and mind.

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The cycling jerseys – Let’s not stereotype – I know it sounds like a girl thing to focus on clothing but that’s not my intent (and, trust me, not all cycling jerseys are fashionable). LIVESTRONG designed an awesome team jersey that we’ll all be wearing on the first and last day to help raise awareness of the organization and team. Then, we’ll wear our tribute jersey, designed in memory of the wife of one of our team members who died from cancer, featuring some of her favorite things. I also have a cool Michigan jersey (that would the state of Michigan, not university…I bleed maroon and gold, friends) and some other fun options. I like seeing the variety of jerseys that others wear. And, okay, yes, you might as well look good if you’re biking 50+ miles in the Iowa heat (or any heat).

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Garmin_LSbandMy personal goal/peace of mind/’take that, stupid cancer’ – I shared in a previous blog the challenges, physical and mental, I face as a bone cancer survivor. Super grateful to be alive and have both of my own legs. But unable to fully quiet the whispers of doubt, frustration and insecurity in my physical limitations from the titanium rod in my leg. I’ll be honest…this training is certainly a good source of confidence building. This experience has also shown me how many people have more faith in my ability than I do. So sometimes I simply need to remind myself that I survived cancer and can do anything I put my mind to. Including bike across Iowa. I’m proud of myself for taking on this challenge and for all of the training and focus I’ve put into it. I get so nervous about hurting my leg that sometimes I forget to simply enjoy the activity or moment. Enough with the doubt and anxiety, it’s time to kick some ass and remind myself who’s in charge of my attitude.

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Biking – Despite the nerves at biking so many miles for multiple days, I’m really looking forward to being on my bike. I love Ruby (my road bike for those who haven’t met her) and the more I ride, the more I enjoy biking. The freedom, the satisfaction of a great workout on my legs, different places to explore on a bike, new people you interact with on the road, adventures in the making. I’m also excited to ride with so many people from LIVESTRONG, getting to know them better and making memories to hold dear for decades to come.

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Meeting people – It may not surprise you that I talk to people almost everywhere I go (like mother, like daughter. Right, Mom?). Isn’t this one of the beauties of life – learning about all walks of life from a variety of people? You never know who you may meet or what you may learn from others. There will be thousands of people at this event from all across the country so there are bound to be some great encounters!

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Exploring Iowa – I love to travel and explore new places (and old!). Plus, my grandma was born and raised in northern Iowa, my mom spent summers at the family farm and my family took some vacations to the state when I was a young child. So I feel a little kinship to the state. 🙂

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If you’d like to support LIVESTRONG’s programs and services for people with cancer, click here to donate to my fundraising page. For every $10 donation increment, you’ll be entered to win a Michigan themed gift bag!

 

Advocating with one voice against cancer June 12, 2017

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Ready to make a difference!

I had an amazing experience last week. I had the privilege, honor and fun of representing LIVESTRONG at the One Voice Against Cancer (OVAC) lobby day in Washington, DC. I joined more than 100+ advocates from 35 states to have over 160 meetings with our legislative officials to ensure fighting cancer is a priority for our government.

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One Voice Against Cancer is a collaboration of national non-profits delivering a unified message on the need for increased cancer-related appropriations. OVAC has made great strides in getting Congress to increase funding for cancer research and prevention programs. But of course, the work is far from done. Not when one out of four deaths in the U.S. will be caused by cancer. I’ve been fortunate to advocate with several organizations in DC in the past. Last year, I attended OVAC with LIVESTRONG, refreshing my energy and drive to make a difference (read about last year’s experience!). So I was very excited to be selected to attend again.

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I have always been interested in politics and love advocating on behalf of others affected by this disease. I wouldn’t say that I feel an obligation as a bone cancer survivor, yet I feel so grateful and blessed to be alive that it fills me with a deep satisfaction and I truly thrive in the environment. It’s so empowering and rewarding as a cancer survivor to work with other advocates, our elected officials and their staffs to make cancer research, prevention, programs and healthcare a priority. I have always believed that it take one person to make a positive change and I’m giddy when I think of the tremendous outcomes possible when all of us work together for positive change.

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Our asks to our legislators included (check out the full details):

  • Support $36.2 billion for the National Institutes of Health
  • Support $6 billion to the National Cancer Institute
  • Support $514 million for the Centers for Disease and Control cancer prevention programs

Two other women from Michigan attended OVAC so we teamed up to attend five meetings with our various senators and Congressmen. All our legislators agreed that funding for cancer research and prevention is critical and also agreed that any slowing or cutting of funds would mean death for too many people. We know this budget process is going to be….challenging, to say the least, so we, of course, will continue to follow with the offices to ensure our representatives stay committed to helping millions of people.

This trip was also a bit poignant for me….last Thursday was 20 years since I started

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Millions of reasons to advocate.

chemotherapy for bone cancer. I can vividly recall being at the hospital, port inserted in my chest and IV drip starting, waiting for the throwing up to begin and my hair to fall out (throwing up started four days later, my hair fell out six days later). To be in DC, almost exactly 20 years later, advocating for other cancer survivors and representing those no longer with us truly felt like a beautiful full circle.

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One of my favorite pieces of this experience is, of course, the people who also attend as staff and advocates. We all come with our individual stories, whether we’re cancer survivors, caregivers, family members, friends of someone facing the disease. Yet we immediately have this common bond of cancer touching our lives, bringing us together in the fight. Each person’s story weaves into my heart and stays with me as I walk into legislative meetings and after I return home. Many of these people have become good friends, creating those bonds you know will travel long into your life. In these people, I actually smile at cancer because through the tears, sadness, anxiety and stress that cancer causes, I think of these friends and feel joy and laughter. Cancer causes such chaos and the people I meet are the beauty, the anchors to the chaos.

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I was also honored to be asked to share my cancer story as our send-off speech. My cancer story can’t be shared without sharing my dad’s story, as our treatments and outcomes are forever intermingled. Both my dad and I are examples of the impact of cancer research and treatment. Not so many years before my diagnosis, amputation was a common treatment option. Thankfully, research, better treatment protocols and new technology led to advances in killing tumors and trying limb salvage so that my femur and part of my tibia were replaced with titanium rather than amputated.

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Sharing my family’s cancer stories

My dad wasn’t given a good prognosis when we received his multiple myeloma diagnosis. However, research and new treatment options kept us one step ahead of his cancer for six years, until there were no more new drugs to try. But I will forever be grateful for those six years with him, precious moments to create so many memories to hold in my heart and mind. I know that he is beside me every time I walk into an office to ask for support.

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These are a few reasons that I advocate for funding for cancer research and prevention. There are millions more…..more than 1.7 million Americans will hear “You have cancer” this year, and more than 15.5 million cancer survivors will learn to navigate their new normal. Families and friends will say good bye to an estimated 1,645 people a day. So, yes, my friends, there is a lot of motivation to get involved.

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Attending this year’s OVAC was another wonderful experience working to help others. I never tire of these experiences, for I am alive to celebrate another day. And I believe that each success we have ensures thousands of others will be alive to celebrate too.

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You can get involved helping others touched by cancer too. If you don’t want to attend meetings or go to DC, that’s ok. We need people to send emails, make phone calls, use social media and do many other things too. Check out LIVESTRONG’s advocacy efforts, and the American Cancer Society Cancer Action Network also does a lot of work on state and federal issues.

 

One voice on cancer survivors day June 4, 2017

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Grateful to celebrate life with my nieces and nephew

Today is National Cancer Survivors’ Day. This annual day celebrates people who are cancer survivors, and also family members and friends. Because anyone who has faced the disease is a true survivor.

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I’m so blessed to be alive 20 years after my diagnosis with osteosarcoma, a form of bone cancer. I’m fortunate to have survived 13 months of aggressive chemotherapy and a surgery to replace my femur and knee with titanium. I’m grateful to wake up to celebrate every day with the more than 15.5 million other cancer survivors in the United States.

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Today, I’m also honored to be traveling to Washington, DC to join 39 other LIVESTRONG advocates for the One Voice Against Cancer lobby day. There will be 130 volunteers representing 19 organizations from 38 states coming together to advocate for funding for cancer research and other critical cancer programs. If you follow politics or the news even a little bit, you know the important issues being debated about healthcare and coverage for millions of Americans. We’re going to make sure that the voices of 15.5 million cancer survivors and their families are heard by our elected representatives. We’re going to speak on behalf of those who are no longer here with us because of cancer, and millions who will hear the words, “You have cancer” in the future.

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This year at OVAC, we’ll push to make funding for cancer research and prevention a priority. It’s estimated that more than 1.7 million people in the United States will be diagnosed with cancer this year, and over 600,000 will die. There is a lot of great research and prevention programs being developed and we don’t want to see those slowed or stopped. My fellow cancer advocates and I will be meeting with our senators and representatives to ask them to:

  • Support a $36.2 billion budget for the National Institute of Health in FY18, including funding provided from the 21st Century Cures Act;
  • Support $6 billion for the National Cancer Institute; and
  • Support $514 million for the CDC cancer programs

Someone once told me that I should ‘get over’ having cancer. For a very brief moment, I took it to heart, wondering if I should try to get over it. Until I realized that I can’t get over it. Because I did have cancer. I didn’t choose it and I’m not ashamed or embarrassed for having it. I am a cancer survivor. That is the reality of my life. Being a cancer survivor is as much as a part of me as being a female, daughter, sister, Caucasian, etc. We can’t compartmentalize various pieces of who we are because it’s the sum parts that make us whole. So I don’t apologize for being a cancer survivor. And I’m not going to get over it. I’m going to embrace it and celebrate it every day because it means that I’m alive to enjoy another day.

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A beautiful statement!

I feel great gratitude and blessings for being a cancer survivor for 20 years. I am fortunate. And I believe in showing my blessings and gratitude by giving back and helping others. It’s why I volunteer for great organizations that support people with cancer, such as LIVESTRONG, American Cancer Society and Imerman Angels. It’s why I volunteer to mentor survivors still going through treatment or even post-treatment. It’s why I get excited to advocate for others affected by the disease during the One Voice Against Cancer lobby day and other opportunities.

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I can’t wait to share more about my experience in our nation’s capitol with inspiring people so stay tuned. In the meantime, if your life has been touched by cancer, I hope you celebrate this day (and every day) doing something that makes you incredibly happy!

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I’m honored and excited to share that an article that I wrote relating to lessons I’ve learned as a cancer survivor was recently published by Coping with Cancer magazine. I’d love to share it with all of you in case you are cancer survivor or know a cancer survivor. It’s my way of fulfilling my love of writing with trying to ease another person’s worry and anxiety.

 

Why I’m biking in Iowa for cancer May 5, 2017

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Excited to be part of the team!

Twenty years ago this month, I walked into a clinic as a carefree 21-year-old three months shy of graduating from college. I walked out stunned and terrified as X-rays of my achy knee revealed a tumor growing in the lower part of my left femur. Less than three weeks later, I started chemo for osteosarcoma, an aggressive form of bone cancer. A surgery to replace part of my femur and tibia with titanium, my hair falling out, 13 months of chemo, hundreds of days spent in a hospital bed, 40+ blood transfusions later, I walked out of the hospital a cancer survivor.

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My life had dramatically taken a different direction than planned. Facing your own mortality at 21 forever changes you. In the past 20 years, so many lessons have been learned, challenges faced and overcome, tears shed, and laughter bubbled out. Part of this 20-year journey was becoming an advocate for other people touched by cancer. From mentoring patients to meeting with legislators in Lansing and DC to speaking about young adult survivorship around the country, I am blessed and grateful to be alive to help others through their journeys. While a cancer diagnosis will always bring fear, uncertainty and anxiety, I hope to be able to help alleviate a little of those feelings by making sure programs, services and support are available to everyone.

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Which is a big reason that I’ve supported LIVESTRONG for many years. LIVESTRONG provides a multitude of programs and services to people affected by cancer (Read about some of my favorite LIVESTRONG programs). Many of you know I was so excited to be selected as a LIVESTRONG Leader volunteer this year, allowing me to take an even more active role in advocating for cancer survivors.

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So I decided that, in recognition of my 20-year cancer diagnosis and my

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Miss this sweet man.

commitment/belief in LIVESTRONG’s mission, I’m joining Team LIVESTRONG in a week-long bike ride across Iowa in July. The Register’s Annual Great Bicycle Ride Across Iowa, or RAGBRAI, is the world’s oldest, longest and largest recreational bicycle touring event. Thousands of people from around the country and world attend this annual event. You bike from the Missouri River to the Mississippi River, camping at host towns each night, enjoying music, food, drinks and great company.

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For the past decade, LIVESTRONG has participated in RAGBRAI, usually hosting a team of 70+ cyclists who raise over $100K each year for these important programs and services. This year, the route is a mere 402 miles, the third flattest and shortest route in RAGBRAI history. I simply laugh when people say this! That is still a LOT of miles to bike! The first day is 62 miles (one moment please while I take some deep, calming breaths….ok, I’m back). My surgeon and I decided that I won’t ride every day, as it’s too much on my left leg with the titanium. Our goal is three days and if my leg feels good after a rest day, I can add another.

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Logging some miles to prep!

If you read my blog about my lovely new road bike, you learned about my experience with Team LIVESTRONG at RAGBRAI last summer and how each member touched by heart and inspired me. From the other survivors to the caregivers to those who lost someone dear to cancer to those who rode just because it’s for a good cause and fun….these people are why I’m registered. And besides, 2017 is My.Best.Year.Ever. So why not bike across Iowa??

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Some of this ride is admittedly personal. Before cancer, I ran miles, rode horses and rarely backed down from a physical challenge. Cancer rocked my world in so many ways. Today, I am consciously aware of the rod in my leg and risks associated with hurting that leg (including losing it). Cancer can still, 20 years later, flood me with anxiety, sadness and frustration. Some days I have to turn from watching someone ride a horse, run, play tennis because I miss these so much. But I know how fortunate I am to have both of my legs. I focus on what I can do – ride a bike, hike in the woods, have dance parties and so much more.

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So in July, I’ll ride to remind myself that cancer can never take my determination, strength, laughter and love of life. I’ll ride for the hundreds of friends who make my tribe courageous and full of life, the many friends and family who cancer took too soon, and my sweet, brave dad who continues to be my hero and always in my mind and heart, even if cancer robbed us of him.

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If you want to support my (crazy) endeavor, please consider donating to Team LIVESTRONG via this link. Any amount supports people affected by cancer. To add a little fun (because life has to be full of fun!), every $10 donation increment will get your name entered into a drawing to win a bag full of Michigan-made goodies (think Saunders, Better Made, McClure’s, etc) from me. I’ll even ship so no need to be local.

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Thanks for your support and being part of this journey with me. Now I’m off to ride a bike!

 

 
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