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.)

GinnyTimeSq

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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MBCN’s Scan, Treat, Repeat T-Shirts Now On Sale

July 30, 2015
Shirts are $15 at http://www.booster.com/mbcnscantreatrepeattshirt; allow extra time for processing and delivery

Shirts are $15 at http://www.booster.com/mbcnscantreatrepeattshirt ; allow extra time for processing and delivery

If you’ve attended a recent MBCN conference, you’ve seen our “Scan, Treat, Repeat” tshirts. We are happy our shirts have been a hit! In fact they’ve been so popular, we’ve struggled to keep up with the demand.

Good news!  We are offering shirt for sale again via Booster.com. Our shirts can be ordered at http://www.booster.com/mbcnscantreatrepeattshirt for $15.

Because it isn’t feasible to screen print tshirts on demand, the tshirt vendor doesn’t print the shirts until all orders are received. The shirt company requires site users to run campaigns that are generally three to four weeks long. So, shirts can be ordered up until August15, 2015. It will then take about two weeks for the vendor to print and deliver the shirts.

In  addition to printing and shipping costs, Booster.com collects a percentage of each sale. We wanted to make our shirts as affordable as possible. The lowest price allowed at Booster.com is $15.

Now  is the time to order your shirt for September or October!

We know that hundreds of you already have our shirts. But who wore it best? Share your best Scan, Treat, Repeat tshirt pictures on MBCN’s Facebook page or email them to us at mbcntshirts@gmail.com.

 

Rebecca DelGaldo and her Integrated Project Management colleagues rocked MBCN's shirt last Oct. 13 in Chicago.

Rebecca DelGaldo and her Integrated Project Management colleagues rocked MBCN’s shirt last Oct. 13 in Chicago.

 


MBCN’s Scan, Treat, Repeat T-Shirts Now On Sale

April 23, 2015
Shirts are $15 at http://www.booster.com/mbcnscantreatrepeattshirt; allow extra time for processing and delivery

Shirts are $15 at http://www.booster.com/mbcnscantreatrepeattshirt ; allow extra time for processing and delivery

If you’ve attended a recent MBCN conference, you’ve seen our “Scan, Treat, Repeat” tshirts. We are happy our shirts have been a hit! In fact they’ve been so popular, we’ve struggled to keep up with the demand.

Good news!  We are offering shirt for sale again via Booster.com. Our shirts can be ordered at http://www.booster.com/mbcnscantreatrepeattshirt for $15.

Because it isn’t feasible to screen print tshirts on demand, the tshirt vendor doesn’t print the shirts until all orders are received. The shirt company requires site users to run campaigns that are generally three to four weeks long. So, shirts can be ordered up until August15, 2015. It will then take about two weeks for the vendor to print and deliver the shirts.

In  addition to printing and shipping costs, Booster.com collects a percentage of each sale. We wanted to make our shirts as affordable as possible. The lowest price allowed at Booster.com is $15.

Now  is the time to order your shirt for September or October!

We know that hundreds of you already have our shirts. But who wore it best? Share your best Scan, Treat, Repeat tshirt pictures on MBCN’s Facebook page or email them to us at mbcntshirts@gmail.com.

 

Rebecca DelGaldo and her Integrated Project Management colleagues rocked MBCN's shirt last Oct. 13 in Chicago.

Rebecca DelGaldo and her Integrated Project Management colleagues rocked MBCN’s shirt last Oct. 13 in Chicago.

 


Remembering Joani Gudeman (1964-2014)

July 27, 2014
Joani was a wonderful advocate; she's shown here participating in a 2013 video

Joani was a wonderful advocate; she’s shown here participating in a 2013 video

We are sorry to share that our friend and fellow board member Joani Gudeman died Friday, July 25, 2014 at age 50.  There will be a memorial service for Joani at Chicago Sinai Congregation, 15 W Delaware Place, Chicago on Friday, August 15 at 10 a.m. All are invited.

 

Joani told her story as the one of the patient introducers at MBCN’s 2013 conference in Houston. “I’m Joani,” she said. “I’m a wife, mother of two teenage boys, a dog lover, mystery reader, a vegetarian, trained listener, board member of MBCN and a person with metastatic breast cancer.”

 

In those few sentences, Joani set out her priorities: family first and cancer last. It is also telling that, with typical modesty, Joani referred to herself as a trained listener. Until recently, Joani was a practicing psychotherapist.

 

Originally from the Northeast, Joani came to the Midwest to attend Lawrence University in Wisconsin. From there, she went on to Chicago to attend the School of Social Service Administration at the University of Chicago and the Illinois Institute of Professional Psychology.

 

Although her official capacity with MBCN was Chair of Outreach and Volunteers, she also served in an unofficial capacity as a diplomat, consensus builder and in-house counselor. She patiently assessed and addressed the issue at hand. If the solution meant extra work for her—such as painstakingly reviewing and revising a lengthy and technical patient publication, she neither complained nor sought the accolades she deserved. She just did it.

 

“Our work together has helped me in so many ways,” Joani told us a few weeks ago. “Not only have I learned so much from each of your incredible talents and skills, I have been touched by your passion, love and commitment.  Working with you all gave me purpose, provided needed distraction and pushed me to expand myself in new ways.”

 

Joani touched us all in so many ways. In one of my last email exchanges with her, I told Joani I was thinking of her as I wrestled with some outreach tasks she previously handled. As I dealt with one particularly challenging call, I had to contain my impatience. I told Joani I needed a WWJD bracelet: What Would Joani Do?

 

That is a question we will be asking ourselves often in the weeks and months to come. Our heartfelt condolences to David, Jacob and Samuel and all of Joani’s family and friends.

 

–Katherine O’Brien
Secretary
MBCN

 

Interment will be private. A public service celebrating Joani’s  life will be held shortly. We will  share the information when we receive it.


Where’s my clinical trial?

May 17, 2014

by Ginny Knackmuhs, VP of MBCN

I’m one of the lucky ones, I know.

Although I was diagnosed with metastatic triple negative breast cancer 5 years ago, I have been on the same treatment regimen since then. No progression, just blessed stability. I hesitate to write that sentence or say it out loud—afraid I’ll jinx my good fortune, always mindful of the next scan around the corner, when everything can change in an instant.

Metastatic breast cancer (MBC), also sometimes called advanced breast cancer or Stage IV disease, is incurable, but still treatable. Oncologists like to say it is a chronic disease, but with an average life expectancy of 2.5 to 3 years, it certainly isn’t chronic yet. Give us 10 or 20 years of stable treatment and quality of life and we’ll be happy to call it chronic.

ImageNext week I’m going to ASCO in Chicago, the annual meeting of the American Society of Clinical Oncologists. I’ve reviewed the agenda. Interesting and promising research will be reported on, not just in breast cancer but across the cancer disease spectrum.

One thing I didn’t find? Research papers about me, about those of us who are stable or have been NED (no evidence of disease) for years. We are defying statistics and maintaining that fragile, illusive state of tumor dormancy. Isn’t any researcher interested in running my genomic profile, sampling my blood and tumor tissue, establishing a baseline of a mets patient who is doing well? Isn’t it worth looking at patterns that might emerge from studying all of us at this stage of our disease? Why are we among the enviable few of patients living with metastatic disease? Not to collect our data seems like a lost opportunity, a cache of valuable information that should be captured.

Dr. Susan Love in speaking about her research foundation, often cites an anecdote about aviation experts in World War II. They were studying downed planes until someone suggested this: “Why not look at the planes that stayed in the air? ”

This is the 50th anniversary of ASCO and visiting cancerprogress.net reveals milestones in cancer research and treatment. Yet, there is still much room for improvement. 40,000 women and men die every year from breast cancer—metastatic breast cancer. That number is essentially unchanged in the last decade. 110 people each day, every day, a daily catastrophe that doesn’t make headlines. 110 people dying every day; 770 dying every week; over 3000 every month– from the cancer, which is still viewed as one of the ‘better’ cancers to get. We can and must do better. Even Nancy Brinker tweeted this week: “So much more work to do together to end MBC.”

So, ASCO researchers, I am ready and willing. Study me. Collect my data. I know there are others out there in my situation. Last month I spoke at a program at NYU and a few people in the audience spoke up and said they had been NED for years. Sign us up, ASCO. We’re ready to help.

I’m not a researcher or clinician, just a patient advocate, a woman living with metastatic breast cancer, who is attending the ASCO 2014 meeting and will take every opportunity to ask: Where’s my clinical trial?


Remembering Our Friend and Past Board Member, Kathy Coursey-Boes

March 1, 2014
Kathy and Addie on the job for MBCN

Kathy and Addie on the job for MBCN

We are sorry to share that we’ve lost  our friend and former MBCN board member Kathy Coursey-Boes. She died on February 14, 2014 at age 53. “Our hearts go out to Kathy’s family,” said Deb Tincher, vice president of the Metastatic Breast Cancer Network. “She was so instrumental in educating people about this disease. The metastatic community has lost a powerful voice–we were privileged to call Kathy our sister and friend.”

Kathy died on Valentine’s Day–if we had to lose her, we are glad it is on a day filled with love and kind thoughts–just like Kathy herself. Kathy truly was a sweetheart–we will miss her soft Southern accent and her invariable “y’all.” But Kathy did not merely use “you all” as a figure of speech–it was more of a mission statement. Her heart was truly open to others.

For Kathy, a stranger really was just a friend she hadn’t met yet. “I never met Kathy in person,” wrote one Facebook friend and fellow cancer patient. “I read her posts daily and she always seemed so upbeat and happy, regardless of what she was dealing with And it was very obvious the love she had for her husband and daughter.”

“When I first met Kathy in 2009, she had just been awarded and recognized as THE PINK POWER MOM from the Kids II Foundation,” recalled Shirley Mertz, MBCN president.  “She decided to donate her prize money to MBCN because she believed that there were many women who needed the support and education MBCN provided.  How generous she was!”

Kathy, accompanied by her young daughter, Addie, was a cheerful and comforting presence at conferences, a wonderful representative for MBCN. She was a passionate advocate and instrumental in garnering support for the 2009  proclamation that established October 13th as  National Metastatic Breast Cancer Awareness Day.

“We requested one day in October when we would be seen and heard through the maze of pinkness,” Kathy told Coping Magazine. “Senator Evan Bayh from Indiana and Representative Rosa De Lauro of Connecticut took the lead in supporting the resolutions to declare October 13 as National Metastatic Breast Cancer Awareness Day. It took many calls and a lot of footwork but the U.S. House of Representatives passed the resolutions that we proposed. We now have our day!”

“Inspiration” is a word that is often generously and carelessly applied. But there is no better embodiment of inspiration than Kathy Coursey-Boes. It was not in her nature to complain or wallow in despair or pity. She dealt with cancer in a brisk, matter-of-fact way. Whatever the complication or physical affront, she met it and moved on–always anchored in her deep and unassailable faith.

Our sincere and heartfelt condolences to Kathy’s family and friends. Please know that we will always remember her. Kathy’s bright spirit will live on in all that we do.


Finding Financial Assistance

January 12, 2014

JarcoinsWe frequently field inquiries about financial assistance for direct medical costs (co-pays, deductibles), related non-medical costs (transportation, gas, child care) or daily living expenses (rent, utilities). Note that MBCN does not give direct aid, and, as an all-volunteer operation,  lacks the resources to provide one-on-one advice.  But we wanted to offer these general  suggestions–if you have a tip, please comment below!

Many agencies budget a certain amount of financial aid per year. Once they have disbursed their annual allocation, that’s it until the following year. Some national cancer non-profit groups can direct you to sources of aid in your community–but few offer direct financial help themselves. With some research, you can find sources of help in your community. If you lack the time or computer access to investigate these organizations, recruit a relative or friend to help you!

Don’t automatically assume you won’t qualify because you are working, have insurance or are too young or too old. One of our members offers this example: “I have bone mets and have been getting a monthly bone-boosting shot for years. Because I am employed and have insurance, I assumed I didn’t qualify for co-pay assistance and I never asked about it. But the drug maker actually has a program for people just like me that will save me thousands of dollars. Every penny counts–I wish I had looked into this sooner!”

Talk With your Health Care Team. Often a social worker or financial person at your hospital or infusion center can offer suggestions and direct you to local resources.

See What is Available. Cancer Care, a national organization has a very helpful booklet, A Helping Hand- The Resource Guide for People with Cancer. You can view the document online or order a copy. You can also contact Cancer Care at 800-813-4673 and speak to one of their professional oncology social workers, who will guide you through the process.

Check with Individual Pharmaceutical Companies. Almost every pharmaceutical company has patient assistance programs to help patients with the co-pay for specific drugs. The website is usually the name of the drug. So, for example, if you are taking Herceptin and need information on assistance with co-pays, go to  www.herceptin.com. Similarly,  for Afinitor: go to www.afinitor.com.   For Xgeva, see www.xgeva.com.

Call 211. Many communities have a 211 information and referral service, funded by The United Way.  Simply call 211  or go to : www.211.org to find help with food, housing, employment, health care, counseling and more. Available in English and Spanish.

Check the Database to Find Help in Your Area. The Cancer Financial Assistance Coalition (www.cancerfac.org) is a group of 14 organizations who provide a searchable database of resources available to you based on your diagnosis and zip code.  You simply enter both and will then get a list of organizations who may be able to help you, including those local to your state or area.

Know your Social Security Disability Options. Many people diagnosed with metastatic breast cancer, also called advanced breast cancer or Stage IV breast cancer, qualify for Social Security Disability under the compassionate allowance program. (This assumes  you have the required work history.)  This can be very helpful, if you are no longer able to work. Note that you need to have your own insurance coverage for a two-year waiting period before Medicare takes effect.  Read more on how to apply.

Early Life Insurance Payouts. A life insurance policy ordinarily pays benefits to a beneficiary after a policy owner dies. Those benefits are accelerated if they are paid directly to a chronically or terminally ill policy owner before he or she dies. Check with your insurance agent or company to see if your policy includes or offers the option. Group policies for term or permanent life insurance may also provide accelerated benefits; check with your benefits administrator.

Note that a metastatic diagnosis isn’t an automatic entitlement to an early payout; your doctor will be asked to affirm you have a terminal illness with death expected within a specific time frame (usually 12 to 24 months). Very few benefit administrators are familiar with accelerated death benefits, it’s wise to review the policy yourself and contact the insurance company directly. Here’s what some people with MBC report.

Here is just a sampling of potential sources of help:

Help Now Fund  provides emergency financial assistance to help people in active treatment with their rent and utilities: http://www.thebreastcancercharities.org/help-now-fund/

The Health Well Foundation offers assistance with copay or insurance premium payments for insured patients, based on availability of funds. They have a quick eligibility test online:
http://www.healthwellfoundation.org

Patient Access Network Foundation provides  co-pay, deductible and medication financial assistance:

PAF Financial Aid Fund Division is an independent division of Patient Advocate Foundation. It  provides small grants to patients who meet financial and medical criteria.  Patients who are interested in applying for financial assistance should start by calling this division toll free at (855) 824-7941.

Freebies and Discounts for Cancer Patients as compiled by 1 Up on Cancer:

http://www.1uponcancer.com/freebies-and-discounts-for-cancer-patients/

See More Options Here.  MBCN has a website page that also lists financial resources.

Be Persistent. You may have to make a lot of phone calls and visit a lot of websites in order to get help. There are restrictions on the type and amount of aid given and organizations often have limited funds to disburse.  But hopefully your persistence will yield results and you will have some peace of mind about your financial status.

Please share this with anyone you know who is having financial difficulty because of their cancer. If you have other suggestions based on your experience, please comment below.  Thank you!