Heather's Hangout

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

Working together to fight cancer September 25, 2017

HH_CapitolDC_92017

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).

2

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.

2

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)
2
HH_LincolnMemDC_92017

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.

2

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.

2

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.

2
LOH_DC92017

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.

2

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.

2

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.

2

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.

LOH_DadHHbags 92017

Advertisements
 

Exploring our nation’s capitol June 14, 2017

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.

2

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.

2

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.

2

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.

2

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.

2

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.

2

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!

2

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).

2

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!

2

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.

2

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.

MLKquote

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

 

Advocating with one voice against cancer June 12, 2017

HH_CapitolDCOVAC

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.

2

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.

2

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.

2

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.

2

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.

2

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.

2
HHOVACspeech

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.

2

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.

2

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.

2
2

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

HHkids5_LSshirts52017

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.

2

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.

2

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.

2

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.

2
Survivor_LIVESTRONGimage

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.

2

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!

2

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.

 

 
%d bloggers like this: