Komen Advocacy Summit: What is your story? Will you come share it with Congress?

Guest Blog Post By Sally Dunbar, 3-Day Walker

Hands Up For Hooters, Team Captain

I am a breast cancer warrior. I am also a Political Bozo. Which makes it a bit ironic that I was invited to travel to Washington, D.C. last week to advocate to Congress for breast cancer. Truth be told, I had to look up who my house representatives are. How do you refer to them face to face? And I’m still unclear if D.C. is actually a state! Yeah… a political Bozo — first class.

I wasn’t sure what I could offer the Advocacy Summit last week, or why I got the emailed invitation, but how could I say NO? (For the record, I paid my own way — they do not waste money flying bozos around the country!) I figured I would learn something. I could see our nation’s Capitol. And hey — I could probably recruit for my team! So I went. By way of background, I am team captain of Hands Up For Hooters — a huge Komen 3-Day team that primarily walks in San Diego. This year we also have walkers in Boston, Philadelphia, Seattle and Dallas/Fort Worth. In the past four years, we have raised $660,000 for Komen.

I arrived at the Hyatt on Capitol Hill in D.C. for our first day-long training session on Wednesday, May 1st. There were more than 250 men and women in attendance, including Komen staff, as well as CEO Paula Schneider, and Victoria Wolodzko, Senior Vice President of Komen’s Mission. Throughout the three days, I met many Komen Affiliates from all over the US. I met Komen Advocates Scholars, and Research Scholars. (I didn’t even know what those were before.) I met many women living with metastatic breast cancer who were very moving to hear as well as survivor advocates. I also met many African American women who were specifically invited to help give voice to the black community about breast cancer through Komen’s Speak Truth to Power conference. Oddly, I only met two or three other 3-Dayers. I hear there were 10 registered, but I didn’t meet them. Also, oddly, I met many people who did not know what the 3-Day was! How could that be? Clearly, we need a louder voice!

Thursday our group of more than 250 marched to Capitol Hill. All 13 of us from California met with Senator Dianne Feinstein and Senator Kamala Harris’s office. Then two of us met with my House Representative, Ami Bera, and another group member’s representative, Tom McClintock. Komen had pre-arranged meetings scheduled for us with their Health Legislative Aides for 15 minutes each.

During our meeting on the Hill, we had 4 main “Asks” to request their support of:

  1. To increase research funding to the National Institute of Health (NIH), which includes the National Cancer Institute, from $39B, to $41.5B, despite the president’s proposed budget of a $4.6B decrease. Interestingly 80% of our voters support more money for NIH for Bio Tech research, even if it means raising taxes, because they understand the importance to all of us and our families. This “ask” struck me in that we were advocating for funding ALL health issues, not just breast cancer.
  2. Maintain funding for Early Breast and Cervical Cancer Early Detection (B-CEP) at $275M. This helps low income and under- or un-insured women get early screening and diagnostics before they advance to higher stage cancers.
  3. Co-sponsor a new Komen led bill recently introduced by Representative Debbie Dingell (D-MI), called the Access to Breast Cancer Diagnosis Act, aiming to eliminate the disparity between the out-of-pocket cost of diagnostic imaging and tests. The average patient cost of a mammogram is $231. The average patient cost of an MRI used to further diagnose a suspect mammogram is more than $1,000. How many women will forego the advanced diagnosis because they can’t afford it? This bill will lessen patient out-of-pocket costs, leading to more early diagnosis and more lives saved.
  4. Sign on to the Cancer Drug Parity Act (H.R.1730/S.741) as a co-sponsor. Think about this. You have breast cancer. You need chemo. You go to the clinic for your IV infusion with a $25 copay as this is an office visit and what your treatment will cost. But let’s say there is a newer, better drug for you that comes in pill form. Wow. Easy peasy. No driving to the infusion center. No babysitters. No doctors or technicians involved. No travel. No time off work. You just pop the pill a home. This, however, is paid for under your prescription coverage, which for most of us is a 20% co-pay. My partner on the hill has stage 4 metastatic breast cancer. Her treatment caused peripheral neuropathy which numbed her hands, and ended her career as an OB-GYN. So she has no job. Her current drug co-pay is $120 per month. But when that drug quits working for her, the next step is a drug costing $13,000 a month. Her co-pay will be $3,500 each month. She has a daughter in college and she said if she has to choose between her daughter’s tuition, and one month’s co-pay — well, she is a Mom. She knows what she would choose.

We asked our representatives to support eliminating the disparity between IV and oral chemotherapy treatments, so patients like Kelly don’t have to make these types of decisions.

Honestly, I crammed my head with factoids in preparation for these meetings, yet still felt totally inadequate to speak to these issues. Then a bit of divine intervention arrived in the form of what else? My UBER DRIVER from the airport! “What are you in D.C. for?” she asked. I told her. “Really? I have spent my career conducting advocacy fly-ins for decades. I teach people how to advocate. I am currently a professor of humanities, getting my PHD in… blah blah.” Honestly, I didn’t even understand what her PHD was in. But it was a PHfrikkenD! I asked the obvious — “Whachadoin driving for UBER, Doc?” She replied, “I have to fund my research”.

She gave me two invaluable tips for advocating. “First, don’t wear metal to the Capitol — it sets off the metal detectors.” Check. “Second, forget all the factoids Komen gives you. Just tell your story. And make them cry. THAT is what they will remember.”

So that is what I did. I let my partner explain the details about our asks, as the aides dutifully wrote notes (or maybe finished their morning’s Sudoku puzzle — it was hard to tell). Then I told my story.

“I want to tell you why I paid my own way to come to D.C. from Sacramento to talk to you. 14 years ago I was diagnosed with breast cancer. It scared the begeezus out of me. The doctor didn’t pull my treatment plan out of his hat. It was research from the gazillions of women before me that told my doctors what treatment I should have. And it worked. I am here today. But I learned there was more work to be done because too many men and women are still dying. I started walking and fundraising for Komen, because they were working to end death from breast cancer. I formed my team — Hands Up For Hooters — to walk 20 miles a day, three days in a row in the 3-Day event. To date I have had over 300 men and women join my team and we have raised $660,000 for Komen. We are the hiking boots on the ground in the war on breast cancer, so to speak. I do this so that if I get a recurrence, the research will be there to let my docs know what to do. I also walk for my little grandson. This is something I can do today — advocate for his future — so he never loses his wife, or his second grandmother — ME — to breast cancer. THAT is why I am here.”

Was I effective? Well, I didn’t get them to cry. But I did find out that on both sides of the isle there is broad support for research funding and breast cancer issues, and each of the four aides I met with had their own breast cancer story. Their Mom. Their aunt. Their partner. I feel encouraged about their votes.

After our meetings we delivered a dozen information packets to the House and Senate offices who had no constituents attend the summit. It dawned on me that we would have been so much more powerful had we had summit attendees from EVERY nook and cranny in the US — if EVERY house representative got a visit and every state senator heard our story. But some states had no one. Even my state, California, only had 13 of us from the entire state, yet we have 53 house representatives. We missed most of them!

That is where you come in, Mr. and Ms. 3-Day Walker! Consider coming next year. You are invited. Especially if you are from some podunk, off the beaten track location with a lonely representative who doesn’t get many visitors! They want to hear from you. From US. One thing I kept hearing is how much more impactful a volunteer constituent’s voice is over a paid lobbyist. They value us. They listen. Komen almost doubled the size of the Summit this year, to 250. Their goal is to double again for next year — to 500. We 3-Dayers can do it. And think about it. We have spent tons of time advocating for Komen each time we ask for a donation. We are experienced! We know how to make the ask!!!

I will be there next year. And I will come more prepared. I plan to gather stories from my team, and from my own experiences — stories that support the asks that Komen will decide upon. I hope you are there with me. You won’t regret it.

“Dear Cancer, you lose…”: Meet Survivor and First-Time 3-Dayer, Sylvia G.

If I had to write a letter to cancer it would read, “Dear Cancer, you lose…”

Sylvia just finished five and a half weeks of radiation after being diagnosed with breast cancer shortly after her 40th birthday. Though she initially was shocked and numbed by her diagnosis, she gathered her family and friends around her and got “gangsta with cancer” by refusing to let it stop her from living her life and celebrating every minute of it.

Now, after finishing her radiation, she says, “I am feeling strong and just getting settled into my new normal. The silver lining throughout this process has been to just really LIVE because you never know! And of course, if you’re busy living, you have less time to worry about the small (or big) stuff.”

She is on the other side of one part of her breast cancer journey, but that doesn’t mean the journey is over. After her diagnosis, Sylvia did research into all of the work that Susan G. Komen does to support survivors and those living with breast cancer. This, in turn, led her to the 3-Day. She signed up immediately for the New England 3-Day and will be driving in from her hometown of Pelham, New York to walk in her first-ever 3-Day at our New England 3-Day in September. She’s already fundraised more than $3,500 and is continuing to spread the word about the 3-Day and breast health. To say that breast cancer hasn’t slowed her down is an understatement! But don’t take it from us! Sylvia is here to share her story in her own words…

Tell us your breast cancer story…

I had just turned 40 when my world was turned upside down. I received a call I never expected.

“You have breast cancer.”

And just like that I was numb. The music stopped, and the party was over.

While still in shock, my family immediately took me to my mom’s breast surgeon. She had just finished treatment for stage 1 breast cancer the year before and was a total champion throughout it all, I might add. I was able to get positive preliminary information specific to my breast cancer which helped me start to feel the ground a bit.

We decided to go for several other opinions with breast surgeons and reconstruction surgeons. After choosing the team I felt most comfortable with, we opted for the nipple sparing double mastectomy with reconstructive surgery. My diagnosis after surgery ended up being stage 2 breast cancer that had spread to one lymph node. I learned that I would have to have four rounds of chemo plus radiation.

In the days leading up to my first round of chemo, I kept reflecting on how blessed I am to live in a time of so many medical breakthroughs as well as options for treatment of breast cancer. This is when I realized that I needed to be part of helping to continue these advancements and fight to end breast cancer.

And how did this journey lead you to the 3-Day?

I had read online about Susan G. Komen and how much they have done for research, education, screening and treatment. I knew I had found the right match for my mission to bring us closer to a cure so that so many other people, including my children, will not have to suffer through this. I was gearing up to get gangsta with cancer!

And you have! You’ve been very successful with your fundraising efforts!

I immediately started my fundraising by following all the tips on the 3-Day website. Posting on Facebook, personally emailing all my family and friends, remembering to always send thank you emails as well as follow up emails and telling people about corporate matching gifts. At the end of the day, I really am so blessed to have generous and caring people in my life, some of who also have been impacted by this disease, and I am forever grateful for their support.

Though I have had success in fundraising there does come a point that you have to get creative to be able to keep getting donations outside of just family and friends. One way is to go through all your contacts and see who has a business or works for a company that can partner up with you to create a fundraiser. This in turn allows you to use their resources and reach a larger audience to support your cause.

So far, I am very proud of how much I’ve been able to raise, and I am really looking forward to meeting other survivors, hearing their stories of fearlessness, as well as bonding with my team. I can only imagine that feeling of accomplishment after finishing the 3-Day walk!

What are some of your other 3-Day goals?

I want to reach as many people as possible and remind them of the importance of getting regular mammograms because early detection of breast cancer can make the disease easier to treat. I will also continue to stay focused on my health and positivity so that I can be my best self.

I still have a long way to go but since becoming a survivor I don’t think I can ever justify sweating the small stuff.

I have been dealt a couple bad hands but at the end I plan on winning the game!

Coach Heather’s Mom is One in a Million. She’s Also One in Eight.

18341774_10211397027432652_288704117220380159_n

As we approach Mother’s Day, we have a special guest post from Coach Heather, sharing her own family’s breast cancer story. This year, her mom will be celebrating Mother’s Day for the first time as a breast cancer survivor, and Coach Heather is sharing their journey together to remind us all the ways breast cancer can affect any one of us. We all think our moms are one in a million, but when they also become 1 in 8, everything changes.

 

Truly, never did I think that the 1 in 8 would be my mom. There has been zero history of breast cancer in our family. But sure enough, on the afternoon of February 18, 2019, she received the call with me by her side. I didn’t even have to ask…because I already knew. I could tell by the expression on her face. She had breast cancer.

The call came five days after her annual mammogram. In those five days she had two mammograms, an ultrasound, and a biopsy. They weren’t messing around…bam, bam, bam. This was all taking place in the hospital where she spent 37 years of her career and she had her “people” all around her.

Even after the call, we were in shock. Wait, what? Breast cancer? She had had no symptoms, no lumps, nothing that would ever concern her or lead her to believe she was at risk. She immediately started looking to blame this on something that she had done. Maybe she drank too much wine, maybe she consumed too much caffeine. She needed an explanation.

25550325_10213299846321935_5726556089702006051_n

Now, after some of the dust has settled, she is far more educated and realized that regardless of whether there were symptoms or not, she WAS at risk merely because she was aging, and because she was a woman. Sometimes, there is no explanation or logic.

The day after she heard her diagnosis, she left for a scheduled vacation. While I had the opportunity for the news to sink in and the chance to be angry, sad, and feel the roller coaster of emotions, she had to remain calm and cool because she didn’t want to put a damper on the vacation for those she was with. At least until she came home.

One week later we had a 3-hour appointment at the Cancer Center at Henry Ford Hospital in Macomb. We were so nervous, knowing that once this train left the station, it was rolling and there was no going back to life “before cancer.”

So, like we do in most situations, we walked through those doors optimistic, joking, and ready to tackle whatever came next. We met a wonderful surgeon who really laid it all out there. My mom had invasive ductile carcinoma, Stage 1, with a tumor smaller than a pea. A lumpectomy was discussed and the treatment plan that the surgeon, oncologist, and radiation oncologist laid out was far better than we originally thought.  The surgeon said “We caught this early. You are not going to die from breast cancer!”

Cue the BIG sigh of relief! But Mom still had so much ahead of her.

17992336_10211163014942486_8491549199954252411_n

The next week we walked back into Henry Ford for what Mom kept calling “three procedures.” We arrived at 8:30am for her 12:30pm lumpectomy. Prior to the actual lumpectomy, she had wires inserted to act as a roadmap for the surgeon, took a quick trip to nuclear medicine where she had dye injected into her nipple to further direct the surgeon to the location of the tumor, and then finally went into surgery. It went as well as it could go, and we were on our way back home by 3pm.  Mom felt great by 5:00pm, ready to eat Chinese food, and only needed two Aleve per day for the next few days. She was very lucky, and we knew that.

Outside of the breast cancer diagnosis, things have gone as well as they can for someone dealing with this life changing news and journey. About a week after the lumpectomy, Mom’s biopsy results came back with clean margins and no trace in the lymph nodes. Great news! Oncology testing results showed that chemo would not be necessary. So, a month of radiation and then five years of medication would be coming next.

heather

My mom is all about positivity but still knows that her life will never be the same. The days of reading breast cancer books, really “hearing” commercials related to breast cancer, checking labels for soy, and frowning on the red wine she used to love, are the new normal now. She doesn’t want to do anything to contribute to the development of another estrogen-induced tumor.

To say she is and was scared is an understatement. But much good has come of this as well. She is far more concerned about taking care of herself in regards what she consumes, her exercise regimen, and health in general from this point forward. She is also determined to share her story in hopes that her friends will understand the risks, re-evaluate their daily behavior, and (most importantly!) get their annual mammogram. As we always hear, and as Mom has learned, early detection is key.

I am part of a group of 9 women who have been friends since high school and in recent years, as we rapidly approach 50, I often wondered who would be the 1 in 8 to get breast cancer. Knowing the statistic that 1 in 8 women will be diagnosed with breast cancer, I was prepared that surely it would be at least 1 of us. I just never thought it would be my mom. But breast cancer can affect any and all of us. Now she’s not just one in a million. She’s also 1 in 8, and she is never going to quit.