Heather's Hangout

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

Working together to fight cancer September 25, 2017

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Ready to make a difference!

As you know from my previous blog, my birthday was spent in Washington, D.C. meeting with members of Congress to discuss cancer-related bills and issues. I meant to write a follow up immediately after my return……but, well, personal and work ‘stuff’ has provided very little free time (I won’t share how little time has been spent on my bike seat. Insert sad face).

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Quite frankly, some of my time has been spent fighting back against the latest proposed disaster of a healthcare bill. This newly proposed bill would have detrimental effects on millions of people, including those with pre-existing conditions. In fact, I encourage you to call your Senator now to ask them to vote NO on the Graham-Cassidy health care bill. You can click here for a list of Senate phone numbers.

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Thankfully, my time spent in D.C. was successful, fun and motivating. I joined 400+ volunteer leaders and staff of the American Cancer Society Cancer Action Network at a leadership summit and lobby day, where we talked to our legislators about important cancer-related issues. Our requests included:

  • Increase funding for research at the National Institutes of Health to $36 billion;
  • Support the Palliative Care and Hospice Education Training Act (H.R.1676/S.693)
  • Support the Removing Barriers to Colorectal Screening Act (H.R.1017/S.479)
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Grateful for the past 20 years.

There is something about being in a room with 400+ cancer advocates….empowering and motivating. There is something about standing with dozens of other cancer survivors…hopeful and grateful. There is something about meeting with elected representatives to work toward a common cause…..exciting and satisfying.

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Our first two meetings were with our Michigan senators. Both are supporters of our many cancer-related priorities, which I’m grateful. I always enjoy meeting with my senators and their staffs, who are friendly and welcoming. After those meetings, our group split into smaller groups for meeting with our representatives from our home districts. I attended several of these House meetings, all productive. I particularly enjoyed meeting with Rep. Sander Levin. We had an energizing conversation about health care. All in all our meetings were productive and promising in the fight against cancer.

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The evening brought the Lights of Hope ceremony. This touching event included more than 25,000 tribute luminaries lining the Lincoln Memorial reflecting pool. Each bag represented a cancer survivor or someone who died from the disease. It was an emotional journey as I walked among the bags, many decorated with pictures, messages and items of memories. Somehow, both my honor bag and my dad’s memory bag ended up beside each other. I admit as I stared at those two bags, for a moment I felt alone. I missed him deeply in that moment, overwhelmed with the ongoing question of how I survived and he did not. Yet, as I looked around the reflecting pool, at the thousands of bags lit to reflect unity against a disease, knowing I am one of millions who fight daily to make a difference against cancer, I felt comfort too.

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Beautiful Lights of Hope!

I’ve been asked many times over the past 20 years why I put so much energy into this fight. People wonder if I feel obligated. There is some truth to that. Even though I know my dad would say don’t feel obligated, live your life for you. Yet this is my life, and I like it, I appreciate it. I thrive in the environment of helping others, standing together to fight back against a disease that knows no boundaries in who it touches. Or takes from us. I am alive, with a voice that can share my story, and his story. A voice to talk to members of Congress, doctors, health care executives, fellow cancer survivors, caregivers and advocates. I am alive with a voice so that even those who can’t speak, those in a hospital getting treatment, those too sick or tired or scared, still have a voice.

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While I may feel a little obligated to speak out as I breathe, I mostly feel great passion and motivation to work for a positive change that can help others affected by cancer. There is a deep genuine belief in me that if we wrap our arms around the good, the strong, the dedicated, if we all as individuals stand together, this disease will not win.

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This disease has changed my life in many ways. It has broken me, motivated me, led me down many new paths, taken people, and brought people to my life. It is the one thing I think of every day for the past 20 years. It has taught me to stand up to fear and anger, embrace love, hope and kindness, grow courage and strength and motivation, seek love and laughter, enjoy the simple things. It has shown me that one person can make a difference to someone, and many people can impact millions.

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I invite you to be the one person to join the many. Get involved. Make a difference. You can get started by checking out the American Cancer Society Cancer Action Network wherever you live.

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My birthday wishes September 12, 2017

My birthday wishes

Birthdays have always been special days in my family. My parents made each new year fun and happy. We didn’t have bounce houses, farm animals or huge parties like are in excess today, but I loved the sleepovers, house full of family and friends, and laugh-filled celebrations with my favorite Angel food cake.

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When I was diagnosed at 21 with bone cancer, appreciating and celebrating life took on new meanings. I spent my 22nd birthday in the hospital hooked up to an IV of chemo, feeling too nauseous to eat cake (I think my then-pregnant older sister and favorite resident doctor enjoyed my piece!). I promised myself that every birthday from that year on would be a time to reflect on life and remind myself to wrap my arms around the joy of life.

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EEdwards_lifequoteToday, on my birthday, I’m in Washington, DC, ready to join hundreds of other cancer advocates on Capitol Hill in meetings with our various legislators to discuss the importance of increased funding for cancer research and supporting cancer-related programs. It’s a long way to come from that birthday 20 years ago spent in the hospital fighting for my life and leg. A slew of emotions are whirling through me.

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Every year that I celebrate another birthday is a joyous occasion for me. And not one that I take for granted. I will soon have spent more of my life as a cancer survivor than not. What an emotional accomplishment. The past 20 years have been full of ups and downs. I whispered goodbye to my dad as he died from cancer, battling survivor’s guilt almost daily when I think of the life he’s missing. I’ve picked pieces of my heart up more than once, broken sometimes because of my naivete and other times by people I should have been able to trust. I worked tirelessly to remind my body how to walk after surgery…twice. I felt lost and alone many times. I rethought Plan A so many times that I no longer remember what my original life plan was! I’ve learned life is hard. There’s no guidebook, no getting back lost time, no map, no time outs, no re-dos to change something. Sometimes life knocks you flat on your tush. Again and again. And yet…..life is still beautiful. There is sunshine, laughter, kindness, unexpected love, blue skies, hugs, music, mountains, beaches and So.Much.More.

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In January, I dubbed this year as my Best.Year.Ever. Of course I had no idea what the year would bring because I’ve certainly learned you can’t control all that will happen, but I needed goals. And, darn, it’s been a good year. I’m at the lowest weight and best overall health that I’ve been in many years, I logged more miles on a bike than I ever thought possible (the year isn’t over, and I’m already planning how to ride more next year!), I’ve traveled to new places and experienced fun adventures, I’ve been involved with amazing cancer advocacy opportunities with several more exciting possibilities on the horizon, I’ve met so many awesome people and strengthened relationships with people who bring so much joy to my life, and the list goes on. Of course, there are things I’d like to still accomplish with my career and personal life….but there’s still plenty of time left in the year!

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What will a new day bring?

I’ve stepped out of my comfort zone over the years but none more so than almost two years ago when I decided to change the negativity, mundane and discontented cycle my life had slipped into. It was unnerving, very unnerving, to step into the unknown by myself. I had to ignore the doubters and really focus on what I wanted out of life. But I had to do it. For me. And I can honestly say that I didn’t expect to find so much joy, contentment, adventure and satisfaction from those changes. I didn’t realize how much I was holding back happiness until I decided I was worth it and deserved it. Was it easy to leave a relationship and life I thought I wanted and society said I should stay in? Not at all. But I wanted, and needed, to open my heart to the possibility of true love, happiness and real life. And, no, life hasn’t been all sunshine and dancing unicorns; that’s not how life works. But, heck, it’s been good.

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I had a recent conversation with a friend relating to religion and spiritual views. It got me thinking about life in general. It reinforced that just because society says you should think this, or live your life ‘this way,’ the truth is you must do what works for you. And that sometimes is difficult. Because other people may get hurt, or it takes more courage than we’re used to, or others tell us it’s not right, or stepping over that edge into the unknown is heart-stopping. Sometimes, actually often, life takes us on a very unexpected path. Maybe you find a career that you surprisingly enjoy, maybe you meet someone who captures your heart at ‘the wrong’ time (by the way, don’t waste life waiting for the right time), maybe your health doesn’t stay as perfect as hoped. That’s all okay. I know it can be scary, tiring and worrisome. If we let it. Because sometimes the people and experiences we encounter, that are off the ‘traditional path’ of life, are the very ones for us. I’ve learned that often the unexpected moments, plans and people turn out to be exactly what we need to help us find our ultimate path in life, joy and love.

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I’m feeling a bit philosophical this year, and I realize I’m babbling a bit. But, hey, it’s my birthday and sometimes turning a year older makes you pause to think about life. I believe it’s important to check in with yourself every so often.

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What’s my birthday wish? I have a few (again, it’s my birthday so bear with me!). You all find happiness. You find courage to live the life you want. Don’t waste a day. Don’t be afraid to open your heart. Take a chance on adventure and happiness, take care of your health and body, explore the neighborhood and world around you. Share your feelings with people you care about, help someone, be kind, stand up for others. Don’t sit on the couch watching the days go by. When I close my eyes and make my birthday wish, I know what I hope for my life. If you had a wish, what would it be? Think about it…..and go for it!

 

Getting involved in cancer advocacy August 8, 2017

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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.

 

5 tips for sun protection July 18, 2017

Filed under: Cancer Tips — Heather @ 8:45 am
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Wear a hat to protect your face!

We’re in the midst of summer when most of us are outdoors a lot more often. Enjoying beaches, biking, hiking, pool time, baseball, golf, picnics and many other outdoor activities. Exposing us to the sun’s rays.

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As much as we should enjoy the outdoors and sunshine, the scary reality is that skin cancer rates have been increasing for the past 30 years. The American Cancer Society estimates more than 87,000 new melanoma cases will be diagnosed in 2017 and about 9,730 people are expected to die from this cancer. Any change in color to your skin is damage to the skin. So a base tan or light tan or whatever you call it really isn’t a ‘good tan.’ There is no such thing as a good tan.

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I head to the dermatologist today for my 3-month melanoma check. My melanoma was discovered more than 10 years ago so I had graduated to 6-month checks. Until my body tried to misbehave and a recent biopsy came back borderline bad. So I’m back to seeing my doctor every three months for a bit. That’s okay. I like my doctor, and I figure there’s nothing wrong with being careful and catching any potential problems early.

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I am surprised by the number of people who still don’t wear sunscreen, and lay out in the sun to tan (I am that person who freaks when I see a change in my pale white skin!). Or the parents who are great about slathering sunscreen on their children but not themselves.

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Here are some easy ways that I protect myself from the sun (and still enjoy being outdoors in the sun!):

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Hat: I admit I used to be kind of bad about wearing a hat, even though it’s the perfect way to protect your face and scalp. People may think I don’t want to ruin my hair (ha) but I admit that ever since chemo, when I wore a hat often to protect my bald head, I don’t love wearing one. However, I purchased a few baseball and cute straw hats that I’ve been wearing more often. Like I said, it’s such an easy way to protect your face’s skin and your scalp, especially if you’re outside for long periods of time.

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sunscreen

There’s a sunscreen for everyone!

Sunscreen: There are SO many varieties of sunscreen on the market. The most important aspect is ensuring the sunscreen protects against both UVA and UVB. Most of the sunscreen is available in dry touch so no excuses that sunscreen makes you feel greasy. I know a lot of people like the spray bottles so you don’t have to get your hands ‘dirty’ but keep in mind that the spray might distribute unevenly so I recommend either spraying a lot or still rubbing in to ensure full coverage. Use a minimum of SPF 30 and don’t forget to reapply! My doctor provided some good recommendations for my sensitive skin a few years ago and she’s still my go to for answers and references (and sometimes samples!). I’ve already used two bottles of sunscreen this season! I wear a minimum of SPF 55 and own a variety of bottles sizes so I can carry in a bag, purse, cycling jersey, backpack, wherever.

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Sun sleeves/shirts/clothing: Great clothing options are now available with SPF and UV protection, and lightweight enough to wear during warm weather. I have a few long sleeve shirts I wear while hiking that blocks the sun, yet is cool enough during activities. I also purchased sun sleeves to wear cycling. These white sleeves slide up my arm to cover me from shoulder to wrist. And don’t forget sunglasses to protect your eyes.

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Supplements/skin care: My doctor recommended I take a supplement that helps repair and protect skin (talk to your doctor before taking any supplements). I also use a night cream to repair any damaged skin (and helps with anti-aging! Yep, you’re learning my secrets). My morning moisturizer has sunscreen in it so I’m protected when I walk out the door.

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Skin checks: I mentioned that I see my dermatologist every three months for a skin check. This is due to my health history so probably not necessary for most people. However, everyone should have a skin check at least annually. Your primary care doctor can do this, or schedule an appointment with a dermatologist. If you have a family history of melanoma, I definitely recommend annual checks (talk to your doctor if you need something different/more often). Of course, if you see anything suspicious looking (changes to moles or skin), call immediately.

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These are tips that work for me to protect my skin while I’m staying busy outdoors. Talk to your doctor about what works for you and other options to safely enjoy the sun and outdoors. As with anything, remember you are your own advocate. I pointed out a mole that looked like it was changing shape and color to my dermatologist years ago. He didn’t agree but a month later, I returned with the same concern so he removed the mole. Turned out to be early stage melanoma, which was treated with additional surgery. I admit I switched doctors at that point, to someone who had more time and a better strategy to follow my health. But I’m thankful I listened to my instinct to pursue my concern. So pay attention to your body, protect yourself from the sun while enjoying life, and be safe!

 

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!

 

 
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