Ginny Knackmuhs: An Uncompromising Advocate

August 16, 2016

It it is never easy to share the news of another life lost to metastatic breast cancer. But it is particularly hard to let you know that our dear friend and MBCN board member Ginny Knackmuhs has died. Our sincere condolences to Ginny’s family, friends and fellow advocates.

Ginny’s accomplishments on behalf of MBCN and her fellow patients are far-ranging and enduring. She was the anchor of our website–a trusted resource for people around the world. Ginny was MBCN’s treasurer and webmaster but her reach far exceeded those official duties.

Ginny’s husband, Gary, used to refer to  us  as “your people.” If someone from MBCN or another advocacy group called the Knackmuhs’ home and he answered he would hand the phone to Ginny and say, “It’s your people.” He said all of these groups collectively reminded him of “The Five Families” as depicted in “The Godfather.” Although this wasn’t an entirely accurate assessment, in some ways Ginny was our Tom Hagen, the capo who got things done. She was a great natural leader and a woman of decisive action.

As Texans say, some people are all hat and no cattle. Not Ginny– because her treatment center didn’t have an in-person support group, Ginny helped establish one. When a national breast cancer organization overlooked people living with Stage IV breast cancer, Ginny presented the facts and asked them to re-evaluate their stance. (They did.) When the Metastatic Breast Cancer Alliance was coming together, Ginny was front and center and helped jump-start its creation.

A few years ago, an academic cancer center asked us to co-host a webinar on key issues in metastatic breast cancer. The proposed webinar was to take place in November–both Ginny and I felt that attendance would suffer because in the wake of Breast Cancer Awareness month, many people want to take a break from cancer talk. We asked our contact at the cancer center to shift the event to September or October but she said  their schedule was inflexible. Ginny was not to be denied. She politely–but firmly–said we could do it in October. And we did! I would have caved  and resigned myself to the November slot, but Ginny was made of stronger stuff.

“Ginny was the heart and soul of MBCN’s online presence,” says Shirley Mertz, MBCN’s President.  “Many visitors to MBCN.org  have expressed their gratitude to find patient-centric information.” “This is the most informative site I have been to yet,” wrote Jean M.  “Thank you for giving me a place to go, a place to get information that pertains to me.  I was moved by the many testimonials/videos.  So positive.  I found the technical section on drugs and treatments very informative – thank you for that. Also found it easy to navigate your site. It’s a great website and lots of resources, which I will be using.”

Doctors also commented on the wealth of information on the website, according to Shirley.  “This is all to Ginny’s credit,” says Shirley.  Ginny worked extremely hard on MBCN’s redesigned website which will debut shortly. It is a wonderful legacy.

ScanTreatRepeatGkMBCN has popularized the phrase “Scan, Treat, Repeat: Stage IV Needs More.” Ginny and I were talking about a motto that could be used to along with MBCN’s new logo and that is what we came up with. Ginny created the first iteration–complete with the now familiar circle and three arrows. I have seen doctors use the Scan Treat Repeat logo in their metastatic breast cancer presentations and patients quickly embraced it, too. Anyone would be proud to contribute a phrase to general usage, but Ginny has the distinction of contributing  the saying as well as boosting people’s understanding of the disease. MBC advocates often talk about “changing the breast cancer conversation.” Ginny has well and truly has done that.

Board member Deb Tincher and Conference Chair recalls, “If you attended an MBCN conference in recent years, you probably knew Ginny. As treasurer, she sent out scholarship reimbursement checks. It was an arduous and time-consuming task that required collecting surveys, expense forms and receipts from the attendees. Ginny knew many attendees are on tight budgets–she cut the reimbursement checks as quickly as possible. She was always thinking of others.”

Ginny, by her own example, pushed many of us to expect more and to do more. A couple of years ago, there was a special event in Time Square to call attention to October 13th, National Metastatic Breast Cancer Awareness Day. Ginny and I joined some other Stage IV patients and advocates on GMA’s outdoor plaza. (Ginny, true to her 1960s roots, took the precaution of taking only her ID and a small amount of cash with her. “In case we get arrested,” she explained as we walked over from our nearby hotel.)

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Ginny with SHARE’s Christine Benjamin and me on Time Square

I thought that if we were lucky, we might get our signs on television. Ginny actually got the weather person to acknowledge the MBC delegation as well as the Awareness Day designation on national television. “Next year I want to go INSIDE the studio and be interviewed,” Ginny told me.

Ginny had lobular metastatic breast cancer (most breast cancer is ductal) and  she also had the triple negative subtype which notoriously aggressive. She did not write extensively about the specifics of her case, but MBCN would like to share some information we think she would want everyone to know.

“I was diagnosed in 1992 with early stage cancer–Stage 0 or DCIS–the earliest you can have,” Ginny wrote in this blog post. ” I had a simple mastectomy, which was considered a 100% cure, and breast reconstruction. I continued on with my life, without worrying too much about breast cancer. . . I continued for 17 years with annual mammograms, 17 years of breast self exams, 17 years of annual checkups and then I was diagnosed with advanced breast cancer with metastases to the bone–stage IV–treatable but no longer curable. I was no longer the poster girl for early detection, because this time early detection had failed me. Like many in our pink-drenched communities, I had accepted the message that early detection was the cure and that mammograms were a fail-proof screening test.”

Ginny went on to say that her breast cancer education began the day she received her Stage IV diagnosis. “I learned that mammograms are a good tool, but less effective when the woman is young and premenopausal; less effective for women with denser breast tissue; less effective at identifying aggressive cancers; susceptible to many false positives (identifying suspicious areas which turn out to be cysts or other normal anomalies); and unable to predict whether the cancers that are identified will go on to be deadly or will proceed in an indolent and unthreatening growth cycle, better left alone. The message promoted by many breast cancer organizations is one of positivity, survivorship and fighting and winning. So the actual capabilities of a screening tool have been exaggerated and early detection has become synonymous with the cure.'”

Ginny wanted her experience to have meaning. “I never want to characterize cancer as a gift,” she wrote. “I don’t think I need to endure treatments and side effects the rest of my life just to be a better person. But I’d like to believe that I have Stage IV metastatic breast cancer for a reason: to speak out about it, to educate people, to fill in the missing gaps in the breast cancer awareness messages, to dispel the ‘guilt’ myth, that this cancer is my own fault, that I failed to eat right, think positively, live well.”

She further noted that October 13 is Metastatic Breast Cancer Awareness Day. “It’s the one day in Pinktober that Metastatic Breast Cancer Network lobbied Congress for in 2009. One day to talk about the ugliness and deadliness of breast cancer, but also the promise and hope of 155,000 or more living with the disease in the US, struggling to live every day well, waiting for the next treatment to extend our lives a few months longer, hoping for a cure to finally stop metastases from occurring. . .It’s not too early to start thinking about October. I’ll be writing letters, lobbying the media, working to get the message out…”

Amen, Ginny. We will, too. 

–Katherine O’Brien, August 2016

 

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Remembering Sarita Joy Jordan

June 21, 2016
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Sarita at MBCN’s 2015 Conference in Boston

We are sorry to share our friend and fellow advocate Sarita Joy Jordan died this past weekend. Our sincere condolences to Sarita’s family and friends.

I met Sarita shortly after her 2013 metastatic diagnosis. We were at the YSC conference in Orlando and she had just participated in the Disney Princess 5K. Her first thought was for her children–I think that was always her outlook–her children came first.

I often told Sarita that she was so well named–“Joy” was her middle name and she truly exuded it. Sarita brought joy to so many people. If they were having a bad day, they could count on her Facebook posts to raise their spirits. They were often just a cute picture, sometime selfies of her morning drive with “Mini Me” as she sometimes called her youngest son. Sarita was very proud of her kids’ athletic, artistic, musical and scholastic achievements–we loved to share in this pride when she posted their latest accomplishments.

Sarita’s ever present smile was her trademark. She was among the most open and giving people I have ever met. Sarita gracefully dealt with insurance and other issues that would have made most of us swear, cry or just rant. That was not her way. She just deal with things–and she had faith things would ultimately be resolved.

Faith was so very important to Sarita. A lot of people don’t live their faith–Sarita really did–she embodied The Golden Rule. She touched so many lives–and by her own example surely inspired others to love their neighbor, too.

I don’t think Sarita ever hesitated to try something new. A few years ago, she was urging me to sign up for “Casting for Recovery.” Although I am a country mouse, the idea of putting on hip waders and standing in some body of water trying to catch a salmon or trout with a fly fishing rod was not in my comfort zone and I said so. Sarita, the Philly girl, didn’t hesitate at all. Even after she hooked her eye with first ever cast, her enjoyment wasn’t diminished one bit.

Last fall she posted a video of another adventure–this one was First Ascents, I believe. The trip involved  not only kayaking but sitting in the kayak on a bridge about 10 or 12 feet above the water and launching the kayak–essentially jumping into yet another body of water but while wearing a kayak. I can still remember the cheers in that video after Sarita successfully completed the challenge–maybe none louder than hers.

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Mary Hernandez and Sarita shooting the MBC Alliance video: https://www.youtube.com/watch?v=AqUS582jkfg

Sarita was a tireless advocate. She worked with the American Cancer Society, Living Beyond Breast Cancer, the Metastatic Breast Cancer Network, the Metastatic Breast Cancer Alliance, Young Survivor Network and I am sure many others. A few months ago, despite all that was going on with her health, she even served as a DOD reviewer.

For an LBBC blog post, Sarita reflected on why she told her story: “I choose to share my story so that others don’t feel they are alone. I tell my story because I am an African-American and my community needs to be able to relate to the messenger…I  tell my story because I’ve learned that little money is spent on research for metastatic breast cancer and I’m running out of time to have my voice heard. This is why I am so grateful to be a Hear My Voice Outreach Volunteer with LBBC: to participate in community events and advocacy for metastatic disease. I tell my story for those that are no longer able to tell theirs.”

Last year I wanted to make a video about racial disparities in breast cancer. Many of the people featured in the video were Sarita’s friends. I am indescribably sad that she has now joined those friends.

But I will take my cue from Sarita–I will tell my story–and others. And I will embrace the words Sarita used in her Facebook profile: Educate, educate, educate!

Sarita’s legacy is everywhere–in her children, in the many, many lives she touched, in the countless advocacy projects she did. It was truly an honor and a blessing to have known Sarita. I miss her already and I always will.

—Katherine O’Brien, June 2016

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RIP Holley Kitchen, the MBC Mom Who Reached Millions

June 8, 2015

We were so very sorry to learn Holley died today, January 12, 2016.  She was 43 years old.

“Our hearts are broken as we share the news that Holley peacefully passed away early this morning,” writes Holley Facebook page friend and administrator. “She was surrounded by love, as she has been in every moment of her life. . .Details regarding Holley’s services will be forthcoming. Please respect the privacy of those closest to Holley as they grieve and make all the necessary arrangements. Thank you for your unending support and love.”  ‪#‎Lifer‬

Anyone who wishes to support the Kitchen family financially, can find the links here. Our hearts go out to Holley’s family and friends. She was a true gem.

“I didn’t know my risk for reoccurrence or what metastatic disease even meant,” she told PEOPLE magazine about the impetus for her famous video. “I didn’t want someone feeling like I did upon reoccurrence,” she said. “You get a cancer diagnosis and then you get a re-diagnosis and it’s a punch in the gut.”

Millions of people around the world learned what metastatic breast cancer is thanks to Holley’s decision to share her story.

Thank you, Holley. May God bless and keep your family.

 

Here’s our original post about Holley’s video:

Holley Kitchen’s viral video tells her metastatic breast cancer story…and is educating millions of people around the world about Stage IV breast cancer. Since being posted on June 5, the video has gotten more than 10 million views and 400,000 shares. You can watch it on YouTube here.

Holley's metastatic breast cancer video has been seen by millions.

Holley’s metastatic breast cancer video has been seen by millions.

Holley lives in Cedar Park, Texas. She told her story to KVUE’s Terri Gruca. “Holley was diagnosed with stage 3 breast cancer at age 39,” Gruca told viewers. “After a double mastectomy, chemo and radiation she thought she was cancer free. A year later she found out it had spread to her spine and bones.”

“I think it resonates with people because it’s honest,” Holley told the reporter. ” It’s what people don’t want to say and what people don’t want to hear,” she said.

We love Holley’s sense of humor and how she personalized her story. She’s also self-deprecating–she stresses that she’s not trying to make people feel bad–her mission is education. Like so many of us, Holley didn’t know what metastatic breast cancer was or how people got it until her own diagnosis.

Holley’s video shows what one person can do. Holley did a great job of educating herself about metastatic breast cancer. She is obviously very familiar with “The 13 Facts Everyone Should Know About Metastatic Breast Cancer.” Thank you,  Holley,  for the shout out to MBCN.org at the very end of the video!

We also love Holley’s term for someone living with metastatic breast cancer: #lifer. You can find Holley’s group” Facebook page here.

 

….and now BuzzFeed has picked up Holley’s story: http://www.buzzfeed.com/juliegerstein/this-womans-breast-cancer-journey-will-leave-you-speechless