Heather's Hangout

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

Getting involved in cancer advocacy August 8, 2017

Filed under: Cancer Tips,Life Lessons — Heather @ 8:30 am
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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!

 

19 years (and counting) June 27, 2017

Filed under: Cancer Tips,Life Lessons — Heather @ 8:30 am
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One of my favorite family pics taken 19 years ago after treatment.

Today marks 19 years since I finished treatment for bone cancer. Nineteen years since I walked out of the hospital, on my own two legs. Bald and skinny. Alive. I still vividly recall breathing in the fresh air, lifting my face to the sunshine….and bursting into tears. Tears of relief at being done with the hell treatment, tears of anxiety at what my new life would be, tears of joy at being alive.

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I had no idea what my new life as a cancer survivor would bring. I was 22, on the cusp of starting my adult life. Worried about a career, wondering if any guy would like me as a cancer survivor, anxious to figure out what activities I might be able to participate in, ready to “feel healthy” again. I really wanted to get in a car, head home and never think about cancer again.

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But that wouldn’t happen. Because I am a cancer survivor. Thankfully. And while I admit I spent several months post-treatment trying to move away from my cancer journey and pretend I was my pre-cancer young adult self, the blunt reality was that cancer had changed me. Good and bad. And so I had to figure out how to embrace the new me and my new life. The past 19 years have been full of challenges and accomplishments. Heartache and laughter. Disappointments and fun surprises. Sitting on the couch and exploring the world. I’ve been…..well, living life.

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A fellow cancer survivor and I recently discussed how cancer has affected our lives. In so many ways. Most significantly, it’s the one thing we think about every single day. It’s of course hard to forget I had cancer. If the memories of weeks of chemo and the harsh side effects weren’t so vividly embedded in my brain, the titanium rod acting as my left femur and part of my tibia  provide a daily attention grab.

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But each day is about so much more than my story. I think of my dad’s fight with the disease and never-closed hole in my heart as I miss him. I think of Sara, Josh, Mikki, Alex, David, Michael, Chuck, Travis and too many others who don’t get to breathe in fresh air or feel the sun warm their faces. I think of Andrea, Terry, Jeff, Amy, Samantha, Lauryn, Cassandra, Kay, Mary, Jonny, Elizabeth, Luke, Tim and millions more who also appreciate life after facing cancer.

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Ready to explore each new day.

When I am scared or nervous to do something or share my emotions with someone, I remember I faced cancer. Nothing can scare me more. I have stared at a monster, fallen down terrified, and stood up to stare back. Cancer has taught me to search for the good in my life and in those who I welcome into my life.

My life has been so influenced and changed by cancer. How can it not be? It struck me recently that I have almost lived longer as a cancer survivor than not. Yes, I am blessed. Forever grateful. Because cancer brought me:

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Courage. Strength. Opportunities. Laughter. Friends. Motivation. Gratitude. Awareness. Kindness. Appreciation. Joy. Achievement. LOVE.

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Some of the best lessons:

  • Do not let life pass you by. Enjoy every day.
  • Share your gratitude by helping others.
  • Do  not turn away from love, even if it doesn’t lead to the path you intended. It doesn’t mean that path is wrong. Embrace every opportunity for love in your life.
  • Know when to let go of the wrong people and hold tight to the right people.
  • Feel joy, every day. Share joy.
  • Breathe in the fresh air, breathe out your fears, hesitations and regret.
  • Open your heart and mind to the possibilities a new day brings.
  • Sing. No matter who is listening. Sing. Dance. Laugh.
 

Exploring our nation’s capitol June 14, 2017

Filed under: Random Travels & Exploring — Heather @ 8:30 am
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washingtonmonumentLast week, I was in Washington DC for the One Voice Against Cancer lobby day to meet with my legislators regarding funding for cancer research and prevention programs. I was honored to be selected by LIVESTRONG to attend this event with more than 100 other advocates from across the nation.

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The experience was awesome and my meetings were positive and hopeful (read about the experience). And I do love being in Washington, DC. I love the history of our nation, watching American and foreign tourists learn about and remember the past (hoping not to repeat some of it). I love the excitement and energy that drifts through the town. I love exploring the different neighborhoods and cultures. I love meeting with our legislators and their staff to work together to change the tide for people touched by cancer.

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After a whirlwind of meetings, I decided to stay an extra day for a bit of sightseeing and fun. It was a bright, sunny, cool day in DC. After breakfast at Bob & Edith’s Diner, we started our exploration by heading toward the National Mall.

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No matter how many times I visit Washington, DC, I love touring the national monuments, museums and memorials. I’m always a little in awe of how large these monuments are….large and impressive in their architecture, construction and meaning. I get reflective, motivated, and emotional thinking of the situations that stirred such thoughts and speeches from these historical figures. So many of the quotes are as meaningful and relevant to the world today as they were when spoken decades ago. I would love to know that our current elected officials walk through these memorials at least once a year, but alas, I truly wonder how many of them have never visited. I think it would be a good reminder of the honor, and major responsibility, of representing the American people.

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The Washington Monument greeted us, standing tall with blue skies above and American flags surrounding it. We walked around toward Thomas Jefferson’s Memorial, overlooking a tidal basin from the Potomac River. People relaxed on the steps, enjoying the breeze, while others were on paddle boats and kayaks in the basin. We then walked to the Franklin D. Roosevelt Memorial, which leads you through the historic years of his terms. FDR’s memorial leads to inspiring and memorable quotes from Martin Luther King, Jr and a large statue of the man.

President Roosevelt
WWII memorial
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It never fails that I get emotional walking through the Korean War Memorial, with the statues of soldiers ‘walking’ through the greenery and the images of men and women engraved on the wall. I can’t help but touch these images, wondering who they represent, who came home, who didn’t. No matter how many times I walk through the memorial, tears always fill my eyes and my heart beats in gratitude for all those who served to protect us and also sadness for those lost. The emotions continue through the Lincoln Memorial, Vietnam Memorial, and World War II Memorial. This is one of my favorites as I love standing near the center, looking around at the wreaths representing every state, knowing all of these make up our great country. As we wandered through the memorials, veterans of all ages from many of our wars also toured each memorial. I can’t begin to imagine their thoughts or memories. I can only be grateful for their service and sacrifices.

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Mainelobsterroll_beerWe stopped at Luke’s Lobster in Penn Quarter for lunch where I enjoyed my first Maine lobsterroll and poppyseed coleslaw, along with my first Allagash craft beer from Maine. It was all delicious!

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I really enjoyed wandering Dupont Circle. I liked the small businesses, homes, ambiance of the neighborhoods. It was busy and hip, yet still resembled a quiet, historic neighborhood. We discovered two neat record stores, filled with albums that brought back many fond memories of listening to great music with my parents. We enjoyed drinks and deviled eggs on the outside back deck at Exiles Bar. They were smoking some great smelling meat. We unfortunately made a quick exit when a woman lit a cigarette near us and we realized the outdoor deck is also a smoking area (so glad that Michigan doesn’t allow smoking outside when food is also served).

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We took the Metro (underground subway system) back to Crystal City where OVAC lobby day was hosted at the Marriott. It was fun riding the Metro many times while in DC. It gets so busy at certain times of the day (especially work day mornings!). Michigan does not have good public transportation, certainly nothing like the Metro, and I wish we did. I finally felt like I was getting the Metro down by the time I had to head home….well, okay, I sort of felt like I was getting the Metro down! I might have gotten on one (or two) wrong trains had my friend not nicely asked where I was going (when everyone else was headed the other way). Well, I would have figured it out eventually. And if nothing else, there’s adventure in exploring the places you didn’t plan on visiting!

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We ended the trip with final drinks at Highline (above McCormick’s & Schmick), which has a great open bar with live acoustic music and plenty of space to relax and socialize. I can picture many fun happy hours occurring in this space.

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It was a great day of exploring new areas and stepping into the past for reminders of all we’ve been through as a country. And just like I’m confident in our ability to make great strides in our fight against cancer, I’m also confident in our ability as citizens to find our way back to a country of kindness, good leadership and smart decisions that help many, not just a special few.

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One of my favorite quotes from Martin Luther King, Jr.

 

Advocating with one voice against cancer June 12, 2017

Filed under: Cancer Tips,Random Travels & Exploring — Heather @ 8:00 am
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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

OVAC_MIstats

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

Filed under: Cancer Tips,Life Lessons,Random Travels & Exploring — Heather @ 8:15 am
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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

Filed under: Life Lessons,Random Travels & Exploring — Heather @ 8:05 am
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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!

 

Why we need one voice against cancer March 16, 2017

Filed under: Cancer Tips,Life Lessons — Heather @ 8:15 am
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Meeting with Sen. Gary Peters to discuss cancer care.

Unless you don’t own a television, aren’t on social media (or the Internet) or perhaps live under a rock, chances are that you’re aware of the hot topic of health care. As a cancer survivor, it’s a topic dear to my heart as I’m most likely affected, as well as more than 16 million other survivors, by any changes to the current law. And that’s just cancer survivors. Add in millions of others affected by different pre-existing condition circumstances and health issues, seniors, and others, and, well, it’s a major topic. Many people are turning their heads because they don’t like politics. But this topic isn’t about politics. It’s about taking care of people.

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Politics has been a bit of an interest for me since I was young. I loved my high school government class, was elected to our student senate and even got to serve as mayor of my hometown for a day! In college, my interests waffled between being a travel writer, communications director/press secretary for a politician or lobbying firm, or running for office myself. When I was diagnosed with bone cancer my senior year in college, my interests turned to healthcare and cancer advocacy, whether as a career or volunteer efforts.

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Last year, I had the great opportunity to attend the One Voice Against Cancer Lobby Day in Washington, DC as a LIVESTRONG advocate (read about that awesome experience here). I’m honored, flattered and thrilled to share that I will again attend OVAC in June with representatives from many organizations, including LIVESTRONG, American Cancer Society Cancer Action Network, Susan G. Koman, Sarcoma Foundation of America and many others. I’m excited to be able to meet with my congressional representatives and their staff to discuss cancer and healthcare issues. It’s critical to keep cancer as a healthcare priority, ensuring coverage for people with cancer and funding for screenings, research, treatment advances, survivorship care and more. I’m also excited to once again come together with the other advocates who are passionate, kind, intelligent and dedicated people. I am a better person when I leave these gatherings, having engaged with such inspiring people.

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I’m always a little fascinated when people ask why I volunteer so much and wonder how I

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Research gave us extra special time with this guy.

can enjoy advocating on tough issues. Sure, I admit it can be mentally and emotionally draining at times. Not everyone I meet has a happy ending, not all issue outcomes swing the way we want. But I am never alone, for great people stand beside me all the time. And I believe we can make a greater difference if we work together for change. It takes one person to make a difference in someone’s life, and one person to make a change and start a movement that could positively impact someone. I’m alive and able so figure why shouldn’t I be that one person?

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I became even more determined to be a voice for cancer survivors when my dad was diagnosed and then died from the disease. Once during my cancer treatment, I rested on the couch as my dad sat beside me, holding my hand. Then he said he prayed every day that he could take my cancer from me. I got so mad at him for that and made him promise, even pinky-swear, that he would never do that again. As much as cancer sucked and unnerved me, I would never want anyone to take that burden. Less than three months after that conversation, I was told my tests were coming back cancer-free. And my dad was diagnosed with late stage multiple myeloma. It devastated me. And deep down, survivor’s guilt bloomed. Yes, I know my dad didn’t have the power to magically take my cancer, yet that doesn’t stop those moments from being laser-cut into my brain and replaying every so often. It was another motivation to become active in cancer advocacy and policy. Because if he could be willing to stand up for me, then I could certainly continue his fight, my family’s fight, and stand up for others touched by this terrible disease.

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I recognized years ago, as a young adult cancer patient facing many serious issues and decisions, that I had the chance to live beyond my cancer and save my leg, because someone else once had the courage to stand up for others. A researcher had the opportunity to develop new cancer drugs. Surgeons had the ideas to test cadaver bones, then titanium rods to try to prevent amputations. My dad was told he had maybe three moths time when he was first diagnosed. Thanks to a wonderful oncology team, his stubbornness and zest for life, and new treatments and drugs, he lived six years. My family had more time with my dad because someone else stood up in the past to push for change. I am committed to pushing for more research for cancer drugs and treatment so another daughter can get more time with her dad. I realized so many years ago that I wanted to be one of the people who held tight to the baton as it was passed and help make a difference in others’ lives.

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USCapitol

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Consider these healthcare facts:

  • More than 16 million people are cancer survivors in the United States. It’s expected to increase to more than 20 million by 2026.
  • Cancer is the second most common cause of death in the U.S., exceeded only by heart disease. This means 1 of every 4 deaths is from cancer.
  • It is estimated that 41 out of 100 American men and 38 out of 100 American women will develop cancer during their lifetime.
  • More than 52 million Americans had a pre-existing condition in 2015, meaning they would be at risk in obtaining health insurance coverage without this protection in the healthcare bill.
  • More than 1.7 million new cancer cases are expected to occur and approximately 600,000 cancer deaths are projected in 2017.
  • 117 million Americans have a chronic condition.
  • Preventive health screenings have helped lower rates of certain cancers, including colon, rectal, cervical and breast.
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When I read this facts, I know that our work isn’t done. Far from it. We’ve made great advances in treatment and survival rates, but when people are still being diagnosed and dying from the disease, then we keep working. These people need health insurance, access to care and preventive screenings. I encourage you to get involved….call your representative to share your thoughts on the proposed new healthcare bill, more funding for health screenings, access to care and whatever else is important to you. Let’s work together to make a difference.

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Need more tips for being an advocate for others? Read my previous blog post.

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Interested in becoming a cancer advocate? Check out LIVESTRONG and the American Cancer Society Cancer Advocate Network.

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Sources: American Cancer Society, Kaiser Family Foundation, Centers for Disease Control & Prevention, National Cancer Institute. US Capitol: © Joegough | Dreamstime.com

 

 
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