ESCAPE 2016

escape_4_cancer_advocates_-_about_us_-_2016-09-06_09-25-30It was so thrilling to attend #ESCAPE2016. How wonderful the BAG IT organization is committed to combining patient advocacy with self discovery. meditation, group exercises, meetings about effective lobbying, running non-profits and even a special Indian dance. bag_it_-_2016-09-06_09-20-08

I went to Escape seeking solutions to balance my personal and professional passions. I discovered I hide my ongoing complications from this disease, because so many of my close friends with stage IV are being ignored and facing much more difficult circumstances. I want to save everyone from the scars of cancer. I have lost so many family members and loved ones to this disease.

IMG_4954The desert was beautiful, but a little warm this time of year. With a no cell phone policy at Miravel Resort, it was nice to not feel so absorbed by the 100’s of tweets, FB posts, texts, and emails, as I tried to balance the great conferences with classes and even group meditations in pods!

I loved that it was a small mix of all kinds of cancer advocates. There was healthy food, meditation, and networking. We had an amazing talk from Shelley at the NCCS where she talked about how we influence policy. IMG_4897

I hope to go again next year. I was fortunate to meet some great people and partake in combining advocacy with self discovery. Patient advocates (especially volunteers) need this type of balance. The burn out factor is real especially when passions are high, time is of the essence to save lives and yet all of us must remember to stop, take a breath, and try to be in the moment especially when the body and mind are filled with stress.

It’s also important to put our personal health first. No matter what stage or complications one has from any cancer, loved ones helping, medical professionals, patient advocates, researchers, and doctors, we are all in this together. We must respect each other and try to move forward. My own personal side effects have slowed me down sometimes, but it’s time we allow ourselves to feel.

IMG_4950I also realized that I have been dealing with a lot of grief. Thankfully I was surrounded by awesome people. Version 2During many of the special meditative and group activities, I found myself quite emotional. I do believe that when it comes to cancer there’s so much emotional pain, physical changes, highs and lows, and some very tough times because of the incredible toll this disease can take. Thank you to the sponsors who help bring Escape2016 to patient advocates.

I came home so much more refreshed and ready for the tasks ahead that keep this new balance. It’s important to take time for reflection and always be mindful of making sure we keep taking care of our selves, while content to push forward helping others.

Happy Father’s Day 2015

I took some time away from personal blogging. This site is the temporary site for A4BC while the main site will be ready very soon. It’s got so many amazing features that we can’t wait to unveil.  Meanwhile we continue to post news, issues and videos, stories, articles, and calls to action etc. We are fine-tuning our full message and  creating an easy place for advocates to unite, find common ground, and focus on tasks that brings empowerment by elevating the quality of lives by so many people affected by the breast cancer epidemic.

US Capitol Dome Houses of Congress Washington DC
Thank you to everyone that signed over 175  letters to congress and read the information. On 6-19 The full Senate passed the National Defense Act (ADAA) 71-25 without Amendment # 1482! Great work!

On a personal note. I know I left many concerned as I battled (oops watch out for the battle language!) deep, dark depression. It was worse than the first time, when my first love Thomas committed suicide by shooting himself in the head on my 16th birthday.

It was not because of any drama with me.  I have had many years to question why he chose to leave me here alone since I thought we helped each other. That’s why no matter how hard things get I would never take my own life because I would not want to hurt my family and friends that I love and care about who also give me so much love.  At the same time I’ve come to accept that people who kill themselves got lost in a moment that they can’t take back.

yogajpgI have steadily danced toward the light in the land of the living. I see all is well. I ‘m enjoying the process of doing my advocacy work and I am feeling confident again. Perhaps I’ve been so upset about so many deaths and the scary number that 30% of all earlier stage breast cancers will go metastatic.

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Metastatic Cancer is the one that kills even though one can live with mets on extended treatments that have many side effects. You can read more about MBC seeing a post I wrote 10/13/2013 about Metastatic Breast Cancer Awareness.

Image 3This weekend is the fifth year anniversary of my brother’s death. He died from metastatic tumors that began in his esophagus. five years ago on Father’s Day. My dad died 7 years ago from metastatic tumors that originated in his pancreas. I have spent the weekend thinking about them as well as close friends no longer here from mets, while looking at old photos and realizing how blessed I am they were in my life. No matter what we all have to try to live in the moment with great joy, as we cherish our memories.

I have decided to reblog what I wrote 2 years ago on Father’s Day with some very minor additions since all of what I wrote still pertains to today.

We-Heart-Dad-Fathers-Day-Card Happy Father’s Day dad. I wonder where you are and whether you and my brother still think about legal cases. I know you both are watching over me as I have taken over responsibilities that I never thought would be mine. I am grateful you taught me how to take care of things and both of you always helped me when I needed help. I think a lot of when you were sick dad and the night before your last night I lied to you when I went to the hospital and told you I slept and woke up early at four in the morning to be with you. I really was at the hospital lounge so you thought I slept because I couldn’t Dad photo_NEWsleep knowing you were alone and very sick in the hospital. I am glad you didn’t know you had cancer for the last 6 months of your life and only found out 10 days before you died.

You said you were tired and a little under the weather but you didn’t have to suffer as long by not knowing. I was so glad I came to see you in the hospital and we had some time alone so I could read you the card I made for your surprise birthday party that we couldn’t have. I am glad we all could come together by your bedside and have everyone holding hands. We were full circle with almost all of your children and grandchildren united in our love for you.

Image 1Happy Fathers Day to my older brother! I really miss you. I was so lucky that you were always there for me when I needed you. I know you were very ill but I thank you for helping me get my paperwork done. I also loved getting to work in your legal office and I treasure the days you took me to court with you so I could see all the great work you did. I kept my promise to you and found the most precious thing you asked me to search for. This treasure is bringing so much pleasure to all of our family. You would be beaming with pride!

I know the chemo was tough, but I thank you for letting me go with you, as I understood because I did chemo too. I only wish you didn’t have so many metastatic tumors that grew so fast which could barely be contained.

IMG_0012I still am so surprised you died on Father’s Day, since being a fantastic dad was so important to you and I know how much you loved all of your children and grandchildren. You worked so hard to provide for them and we know how difficult it was for you to have the cruel disease of esophageal cancer take over your body and mind. You stayed with us as long as you could and I hope wherever you are, please know how much we love and miss you. We had such a special bond and a great childhood thanks to our mother and father and their very special relationship.

I miss your humor and way of uniting everyone for all the important times. It’s hard without you, but please know I have kept every promise that we spoke about and you and dad are always with me and the rest of the family in spirit.

San Antonio Breast Cancer Symposium – A Patient Advocate’s POV

SABCS-2013It was extremely exciting being at the 36th annual Breast Cancer Symposium in San Antonio (SABCS). I was hoping to go on Twitter during the Symposium but was having a lot of trouble during the conference with the wifi signal. I decided to concentrate on the presentations and when I could find information being reported on them I knew that those that could not hear the presentations live wanted to know what was happening there. All of the speakers were incredible. There are tons of studies that were reported in the news that I tried to “scoop” as many as I could at: Breast Cancer News.

ChemoBrain1As much as I try to deny that there is any left over chemobrain from the dose-dense ACT (Adriamycin, Cytoxan, Taxol) chemotherapy that I did for treatment of my primary breast cancer in 2005, I have to admit that as much as I want to have my brain functioning at full capacity, there are residual effects that happen and I can’t hold so much information all at once. At times things slip away. I have particularly noticed that I make errors with numbers. With that in mind I accept my limitations. I tried to be as present as I could during the conference, and I hope to be careful when putting dates with numbers so as not to make careless errors. I plan to attend again next year and I am determined to keep myself on the Twitter feed while I take in the presentations and have an assistant help in finding the articles that represent the presentations so that those who can’t attend can get the information.

blog_iconIf I wait too long to blog about SABCS I know that I will write something so long that it will be too much to read. I am going to post more than one post so that I can keep this at a reasonable length. I am also going to suggest some great links to other blogs and if you wish to follow them just click on the ones that are highlighted in a different color and it will take you to these other great places for information. To read some terrific explanations of some of the studies take a look at Dr. Susan Love’s Act with Love Blog, San Antonio Breast Symposium Day 1 – Day 3, with a great round up including the Survivorship Presentation on Day 3, #BCSM blog presentations by Dr. Julie Gralow, SABCS Highlights, and SABCS Highlights by Dr. Robert S. Miller.

28627_119149311460178_7118937_aI did miss seeing Dr. Susan Love at the conference live but her round up of SABCS is amazing! I saw Dr. Gralow presenting and had the good fortune to meet Dr. Miller in person. I loved seeing the people I know from social media live at the conference. It turns out, thanks to connections on Twitter, that I was fortunate to share my room with a remarkable breast surgeon, Dr. Dana Abraham. It’s so exciting to meet doctors that care about patients and want to understand this disease from their perspective. It is wonderful to see friends who are fellow patient advocates. I have some photos here. If I mention all the names this will really get very long!

IMG_5698Today, I want to concentrate on my takeaway from all the presentations from the perspective of a patient advocate. One of my favorite parts of the conference was the Case Discussions where the panelists included doctors who are experts in medical oncology, radiotherapy, and they also included a patient advocate. Here, doctors come up to the mike and present real case studies and the panelists give opinions and their ideas about what should be done about the cases presented.

IMG_5667 - Version 2It was exciting to see that the doctors included a patient advocate on the panel as it’s becoming clear to me that doctors are learning a lot from patient advocates. I am so impressed with how hard these medical professionals work to understand and help their patients. I am also very impressed with how many doctors are reaching out to patients with social media and including patient advocates by starting to bring them in to the conversation. Listening to the panel of experts recommending treatments, especially keeping track of all the trials that were being presented at the conference, was extremely impressive. Both the doctors and the patient advocates tried to come up with ways to help and I was really impressed with the fact that the atmosphere was focused on presenting all of the evidenced based information to patients about their options and making sure that patients are part of the process in deciding what they do for their treatment.

shutterstock_27416451I think it’s so important that patients make sure they are working with a doctor who keeps up with the latest information available for their specific case and allows the patient to make informed decisions by presenting the patient all the options. When a patient is diagnosed at any stage of breast cancer, there is so much information and it’s hard to sort it all out. Yet if a doctor just dictates the treatment without explaining the pros and cons of all the options, the patient is not being allowed patients to understand fully what choices are available. As patient advocates we want to know as much as we can about this disease because one size does not fit all. Every case is unique.

I was struck by a doctor who had a patient that was having trouble taking her tamoxifen. Her doctor really cared about trying to have her patient be compliant and the patient was having terrible trouble with the side effects. With this case the doctors had some ideas for medications and the patient advocate (Beverly Canin) also recommended alternative therapies. What struck me most was how compassionate the doctors were as they presented their cases as well as the suggestions coming from the panelist, especially when using all the trials presented at SABCS.

For anyone who has breast cancer, has been in treatment, or is in treatment for breast cancer and knows first hand about these awful side effects from so many treatments they can consider alternative complimentary treatments. A great resource for complimentary and alternative therapies is The Annie Appleseed Project,

Is-Chrysin-A-Good-Natural-Aromatase-InhibitorIn contrast to the incredible compassion that I saw from so many doctors, I saw a different approach from one of the case study presentations that had to do with AI’s and compliance of patients. The presenter seemed to want to be dismissive of the patient’s complaints about side effects with these medications. Without calling out the specific study or doctor presenting it, I was disturbed by his lack of compassion and how much he gave the impression that the side effects and his data seemed to imply the effects were probably more in the patients mind than as a result of the medication. Here was an example where a doctor needs to be more like the incredible doctors I was surrounded by as far as being compassionate and realizing these side effects are real.

IMG_5670I also love attending the Alamo Breast Cancer Foundation (ABCF) Hot Topics Mentor Sessions. They always have the best speakers reviewing many of the case studies presented during the day as well as other topics of interest to them. One of the panel discussions was taped and to see this great presentation go to: Breast Cancer Answers’ Video of SABCS Hot Topic Mentor Sessions.

One of the patient advocate questions dealt with asking what we can do as advocates. Clifford A. Hudis, MD the President of ASCO, Chief of Breast Cancer Medicine Service and an attending physician at Memorial Sloan-Kettering Cancer Center, had recommended that we keep writing to congress.

congressimagesI am a member of ASCO in Action and I recommend that everyone interested in being an advocate join this group. They give action alerts and pre-written letters to congress about issues important to all of us, especially in reference to oncology. I always take the letters and when they say “As an oncologist in your district” I change the words to “As a patient of an oncologist in your district” and send the letters off to my representatives. Another important organization to pay attention to is Breast Cancer Action. They also have important actions and letters that impact the breast cancer community. At Advocates 4 Breast Cancer we are working toward trying to get a program to make it easy for other advocates to write these letters, but for now please stay posted on this site for alerts to letters that we recommend you write. I was in agreement with Clifford Hudis, MD’s observation that he hears back from every person we write to in Congress. I send them via email and I am glad that they are paying attention.

IMG_5630I was also moved by a talk that Cate Edwards (daughter of the late Elizabeth Edwards) gave during a dinner with Novartis Oncology about her involvement with metastatic disease, recognizing the importance of the patient as well as the caretakers. Everyone knows how passionate I am about making sure no one with Metastatic Breast Cancer is forgotten.

545527_494545153891973_631458727_aAs breast cancer patient advocates Stages 0-4, we must always put those with Metastatic Breast Cancer (MBC) first and foremost in our minds and they should never be left to feel abandoned or alone. I wish there had been more at the conference focused on metastatic disease. There were some studies, but next year I’d like to see a stronger focus on research for MBC.

Sequestration has taken its toll of health science at the NIH and NCI. During the year things had to be scaled back 10-15% in labs. This hurts research because science relies on heavy funding. Once again this is where we as patient advocates in the US must keep paying attention to what is happening with the budget in congress and keep writing to congress to have our voices heard.

I am going to end this post as I will be posting some more thoughts in another installment. What a thrill it was to attend this conference live. I am also so grateful for the one-on-one meetings that I got to have with my fellow advocates and doctors.

It is time to work together!

I found this great post on Dr. Susan Love’s “Act with Love” blog. She really put in to words everything that is going through my mind in hopes of all of us who care about breast cancer advocacy working together so that we can make a difference. I am glad Dr. Susan Love reminded us that we can have difference’s of opinions on things, yet still work together on mutual projects that we care about. I have always believed that “United we stand, divided we fall.” This post that I re-blogged is so inspiring and well worth reading!
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It is time to work together!

By On Wednesday, September 4, 2013 · 

As the summer wanes and October looms, I am struck once again about the fragmentation of the breast cancer advocacy movement.  The history of activism dates well back to 1952 and the American Cancer Society’s Reach to Recovery when a doctor had to give permission for a post mastectomy woman to be seen by a volunteer, lest she be too distressed by the encounter.   The Susan G Komen Foundation (now Komen for the Cure) started in 1983 to raise awareness. Others, such as the Women’s Community Cancer Project (Cambridge, Massachusetts), the Women’s Cancer Resource Center (Oakland, California), Breast Cancer Action (San Francisco), Y Me (Chicago), Mautner Project for Lesbians with Cancer (Washington, D.C.), and NABCO (New York) were focused on education and political action.  As these groups sprang up around the country, it served as a tipping point in the battle for attention to the problem of breast cancer.  These heady days led to the for the formation of the National Breast Coalition (1991), Department of Defense Breast Cancer Research Program (1992), the National Action Plan on Breast Cancer (1993), the California Breast Cancer Research Program (1993) and the Breast Cancer Stamp (1998). Many good women and men contributed to these early successes and we stand on their shoulders and by their sides.

Now as we head into October, anticipating the arrival of the pink tsunami, in some ways it feels like the original battle to end breast cancer has been co-opted by these annual celebrations of survival.  The messages are incessantly upbeat and rarely mention that many women still go on to metastasize, many still die, and the “survivors” live with a new normal based on the collateral damage caused by their treatments.  My recent experience with Leukemia has made me impatient and dissatisfied with the status quo.  While many programs, such as the National Breast Cancer Coalition’s Deadline 2020 and our own Army of Women, are valiant efforts to move us to the goal, it is going to take more than that to get there.

The goal of ending breast cancer is too important to leave to any one group or approach.  I think it’s time for the breast cancer organizations and foundations to start working together on projects that make sense.   We need to find opportunities to collaborate and speak with one voice. We don’t need to agree on everything, but we do need to rise above our differences to find ways and projects that we can work on collectively. Only by working together will we ever be able to achieve the overriding goal we all share– a future without breast cancer!

Metavivor needs Volunteers

Hi Everyone! Metavivor is having a Nationwide call for Volunteers!

MAJOR EVENT TO BRING ATTENTION TO THE NEEDS OF THE METASTATIC BREAST CANCER COMMUNITY. BECAUSE. IT’S TIME….

 

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METAvivor Awareness Campaign 2014

Sea to Sea for MBC

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Metavivor is now accepting applications for volunteers! Even if you can only spare some small time to volunteer Metavivor needs you! No deed is too big or too small. If you care about Metastatic Breast Cancer, this is worth your time to help.

Event Overview: On February 1, 2014 breast cancer widower Marine Corps LtCol Joseph Fagan will depart San Diego CA, arriving in New York City on Father’s Day weekend. Along the way Joe will meet with researchers, including METAvivor grant recipients, dedicated to improving the lives of metastatic patients.

Joe’s involvement is very personal. In 2010, his wife Lainie Fagan was 29 years old and pregnant with their first child. At 34 weeks she was told her cancer had metastasized and that their child would need to be delivered early so that she could begin treatment. JJ was born October 1, 2010, but tragically it was too late for Lainie; Joe and JJ lost their beloved wife and mother only nine months later. Joe is passionate and determined to do his part so that others can be spared such a devastating loss.

Intent of Event – Awareness and Fundraising: Over 122 days Joe will run 3,845 miles, transiting twelve states and meeting with metastasis researchers, metastatic patients and family members. Public speaking engagements at various locations and the filming of his journey for purpose of a documentary will bring significant attention to metastatic breast cancer and give voice to a patient community that is seldom heard. A coinciding fundraising campaign will bring in valuable dollars to help fund METAvivor’s 2014 research grant cycle, estimated at $320,000.

VolunteersNeededOpportunities for Volunteers: To maximize the effectiveness of the awareness and fundraising campaigns, Metavivor will need volunteers nationwide in many different capacities.

Those wishing to volunteer should send an email with their name, email address and phone number to the volunteer coordinator: dewaynewilcher@yahoo.com.

Note: Committees are being formed now.

Sponsorship* Logistics* Volunteers* Media Advertisement*
Donations in Kind Route Organization Orientation Advertising
Major Sponsors Transportation RV Organizational Coordinators Photography
Donors Transportation Flights Regional Coordinators Documentary
Merchandising Run Team Coordinator Local Volunteer Coordinators Ceremonial Start San Diego
Lodging Volunteer Hours Cataloger Ceremonial Celebration NYC
Meal Coordination Research Center Stops
Project Light Up Social Media
Running Gear Homecoming Annapolis

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You can also help by going to Metavivor’s Facebook page for this event and click “like”, while the page is still under construction. Go to: https://www.facebook.com/pages/Sea-To-Sea-for-MBC/223255354499874

twitter_bird_logoFollow on twitter so you will see the very first tweet!  @C2C4MBC is the official twitter account for this event.

Note from CJ-one of the co-founders of METAvivor:

One quick clarification. The Ambassador Program was launched in 2013 as part of METAvivor’s long-planned national expansion program. It is completely independent of Sea to Sea for MBC, although many volunteers with the Ambassador Program are volunteering to help with the Run as well. The Run is an exciting venture that will occur in 2014. The Ambassador Program is a permanent part of METAvivor and is run by METAvivor Board Member, Lori Marx-Rubiner. Volunteering for either program does not automatically volunteer you for the other. Those wishing to volunteer for the Ambassador program should contact the Director of that program, Lori Marx-Rubiner at regrounding@yahoo.com. Thanks!

“METavivor on the Move” – I am on the team

pinkelephantI have written about my passion (see: While Flying – Frustration surrounds Me ) for doing  everything I can to advocate for Metastatic Breast Cancer (MBC). 6-10% of breast cancer patients are initially diagnosed at Stage IV (MBC). 30% of all breast cancer patients initially diagnosed with early stage breast cancer will eventually metastasize (or have what some of us call mets). 

In the US alone 1 woman dies every 14 minutes of MBC. I have many friends now who have MBC. Metavivor is an organization that I have great respect for. Like Advocates 4 Breast Cancer they are an all-volunteer, patient-founded organization. They are devoted to raising awareness about metastatic breast cancer, funding vital MBC research and they promote the concept that 30% of every organization’s breast cancer research funds should be devoted to MBC research.

Right now only 2% of all funds for breast cancer organizations go to MBC research. This has to change. As the Executive Director of Advocates 4 Breast Cancer (A4BC), I am proud that our organization is listening to Metavivor. We are devoting 30% of our funds each year to MBC research. We hope that other non-profits will follow our example and recognize how important it is for all breast cancer organizations to fund MBC.

finalAs an update to A4BC, we are in the process of getting our official site up and we are working around the clock to have it done. We are now on Facebook.  Thank you everyone for liking the page and if you haven’t seen it, please have a look and “like” the page to stay updated. Please click on: https://www.facebook.com/advocates4breastcancer.

I am haunted by the death of my very good friend Li Bailey, and my other friends who have died from MBC. Unfortunately this list keeps growing. I also hate that many of my friends have recently become part of the 30% joining my other friends who have MBC. This disease robs so many of so much. We must have MBC research that continues to bring about “quality of life” medications that will extend everyone’s lives for years (not just weeks or months). Forty thousand women in the US alone will die from MBC this year.

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Metavivor is also looking for volunteers. They have a fantastic campaign called “Metavivor on the Move.”, inviting people to join the volunteer team. They are establishing 10 regional teams, with representatives from every state, plus volunteers in Canada. Although I have a very full plate, I am part of the volunteer team doing what I can to help with Metavivor.  If you would like to volunteer to help in any capacity of your choosing, send an email to CJ@METAvivor.org

To learn more about MBC please check out Nancy’s Point at: http://nancyspoint.com/mets/

To learn more about METAvivor, please visit their website here: www.metavivor.org.