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.

Testing #Scanxiety

Anyone touched by cancer knows about testing Scanxiety. You don’t want catastrophic thoughts running through your mind.

It’s been a slow process of testing, fuzzy thinking, difficult concentration, pain, and symptoms piling on over the past few months. I’m mostly disappointed that I’m less productive.

It started with pain in my right ribs. Then there was more pain on my right breast that recently extended to my back ribs too. I’ve had X-rays, MRI without contrast, and most recently a bone scan. Each time I hear results of no mets I’m extremely grateful.

I’ve had early stage breast cancer twice, chemotherapy, radiation, lots of breast surgeries including a mastectomy with reconstruction. Everyone knows how passionate I am to see that we do everything to extend lives with quality of life and find a cure for Stage IV.

Testing Scan 2Just when I thought all was clear I got a call from my oncologist that after further inspection there is a suspicious spot on my spine at T8. Tomorrow they do an MRI with contrast on my spine and see if a biopsy is warranted.

I could use good thoughts and prayers.

While I feel fear, I refuse to let it run my life, (easier said than done) especially when there’s so much I am grateful for including all the incredible support around me.

 

______________________________________________________

Click for  Update on Scans  It’s great news!great_news_clipart_-_Google_Search_-_2016-02-06_09.49.49

A4BC at SABCS 2015

We are pleased to announce the success of our newly implemented scholarship program. We awarded two amazing women, Jennie Grimes and Grazia De Michele paid scholarships thanks to our generous donors at Advocates for Breast Cancer (A4BC).

Jennie Grimes Susan Zager grazia
Jennie Grimes, Susan Zager and Grazia De Michelle

Grazia De Michelle – an Italian born woman currently living in the UK.was diagnosed with breast cancer in 2010, at the age of 30, and has been a patient advocate ever since. She was treated in Italy where, unlike the United States, breast cancer advocacy is still in its infancy and the level of patients’ engagement with researchers and healthcare providers is low. As a result, at the end of active treatment, in 2012,  Grazia started  her blog, Le Amazzoni Furiose (The Furious Amazons), to promote Italian women’s involvement in the international debate on breast cancer. A year later, she joined the Breast Cancer Consortium, a network of scholars and advocates interested in breast cancer, critical health-literacy and evidence-base medicine founded by medical sociologist Gayle Sulik.

Jennie Grimes – a metastatic breast cancer (MBC) patient is literally dying for a cure. She is 35 years old, going through a rough time because there are limited choices of drugs to keep her alive. She asked the professionals at #SABCS15, “please keep me alive.” My heart is breaking because I wish there was more available for her and so many others dying of stage IV breast cancer.
Metup_Dying_for_a_CureMetup_Dying_for_a_Cure_-_2015-12-24_12.51.05Phyllis_(@Groz_P)_Twitter_-_2015-12-27_13.15.18The most exciting part of the symposium was (A4BC) joining with other organizations that are working toward the same mission.  We met with Beth Caldwell, mother, wife, cancer patient, METUP co-founder, and blogger. Meeting people that we know through social media and being able to interact with them is so meaningful because we are able to join forces to save lives. We also met Corrie Painter PHD who along with NiKhil Wagle, MD is working on the MBCProject.org. They believe in sharing the data. This is a whole new way of approaching research.

The_Metastatic_Breast_Cancer_Project_-_2015-12-24_12.58.27
 Learn More at: http://www.MBCProject.org

The truth is that when it comes to breast cancer, we are in an epidemic. Over 40,000 women and 400 men die each year in the U.S. alone from Metastatic Breast Cancer. This is the same number of deaths in the U.S. that occurred during the height of the AIDS epidemic. So while many breast cancer organizations use pink marketing to raise money for a cure, the reality is they just keep saturating the public with the idea that breast cancer is a pretty pink disease with survivors.

(5)_Beth_Caldwell_-_2015-12-28_08.01.55.png

People mean well. But they don’t understand that living with MBC has nothing to do with whether the person “fights hard enough.”

Many people did not understand why we are demanding that Stage IV needs more focus; too many women (and some men) are dying. What we’ve done in 25 years has not had much impact on the death rates. We must prioritize our efforts to save lives.IMG_1713

If we could finally understand why someone gets breast cancer, like we understand how AIDS is spread, it would be a huge help towards finding life saving treatments and prevention.

Donate Graphic 6-25-15

If you want to be part of the work we are doing at Advocates for Breast Cancer, please consider giving a tax free donation. We have a new donation page on our site. We are so grateful to our donors and supporters. Wishing you peace, health, love and happy holidays! 💝💖💝💖

 

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.

MBC_Infographic_01_v14

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.

Local mom’s message about breast cancer goes viral

This is an article taken from “Terri Gruca, KVUE 9:08 p.m. CDT June 5, 2015.site-masthead-logo@2x
Metastatic breast cancer has no cure. Every year 40,000 people die because of it, but it is rarely talked about. A Cedar Park mom decided to change that. Her video is now being shared around the world”No one wants to hear they have cancer, much less that it’s terminal. A Cedar Park mom has turned that diagnosis into her mission. And her message is spreading around the world.

What started as a simple gesture to make people aware is turning into a worldwide lesson.

Holley Kitchen was diagnosed with stage 3 breast cancer at age 39. 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.

MBC_Infographic_01_v14

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

Every year 40,000 people die every year with metastatic breast cancer, and there is no cure.

“It’s my life and I’m going to make the best of it,” she said.

Like many people Holley was totally unaware. Her video had been viewed millions of times in 24 hours.”

Sourced through Scoop.it from: www.kvue.com

To see this powerful video that tells the truth about this disease go to: https://www.youtube.com/watch?v=QDQ0FjP7J-c&feature=youtu.be&a=

You can also go to Hollly’s Facebook page at: https://www.facebook.com/HolleyKitchenCancerLifer?fref=ts

Go here to view Holley’s video on Facebook

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.

Metastatic Breast Cancer Awareness Day – Every Day and every October 13

MetsDay13We all know that October is Breast Cancer Awareness month. There’s pink everywhere and all sorts of breast cancer awareness campaigns. In 2009 Metastatic Breast Cancer (MBC) got one day for awareness. Thanks to the efforts of 9 metastatic patients and countless others, they got congress to designate October 13th as Metastatic Breast Cancer Awareness Day.  It’s a start. “Breast Cancer Awareness” without “Mets Awareness” is not awareness at all. Now we need everyone to be aware of MBC all year-long. Every day should be Metastatic Breast Cancer Day.

Ribbon_whitelinedpinkwashingpicEspecially in October (Breast Cancer Awareness Month) there have been lots of questioning of the words, the color and what really matters. There’s frustration in the breast cancer community because breast cancer has been painted with survivors and death rates trending in a favorable direction. Sadly when it comes to MBC and death rates we haven’t come very far.

For example in the United States alone in 1991 there were about 112 deaths from breast cancer a day. This year there are about 108 deaths a day in the US. While those 4 lives a day are very important people I don’t think that in over 20 years preventing 4 deaths a day is tremendous progress in this country. There are about 155,000 people living with MBC in the US a year. There are almost 40,000 deaths a year from MBC in the US and around 400 of these deaths are men.

545527_494545153891973_631458727_aAlmost 30% of all breast cancers become metastatic. Some start out with “mets” (about 6-10% of cases) but if you get breast cancer at an earlier stage there’s up to a 30% chance that you will become metastatic. Those who have MBC know this. We still don’t know the cause of many breast cancers and we also don’t know why breast cancer patients become metastatic.

MBC_Infographic_01_v14There is no cure for MBC. There are many drugs that can extend lives for years, but treatment is life long switching from drugs that work for a period of time until a drug no longer works. Every case is different and there are different types with some types more difficult to treat than others.

What we do know is that MBC kills very special people. When it comes to breast cancer, people’s stories paint the picture of what happens with this disease. One of them was my fearless friend Li Bailey. In our world of social media very few people knew her. She didn’t have a blog, Facebook page or Twitter account. She had Triple Negative (TNBC) MBC and there were fewer options for her treatment. She knew every detail of her case, and was a very sharp ePatient.

Li and I went through our primary chemo together at the same time. We got together a lot as friends and it was a relief that I wasn’t bald alone. We learned so much about breast cancer together. I had a local recurrence. Today I am NED (no evidence of disease). She had a mets recurrence on her birthday, February 19, 2009. She danced in to the light on January 6, 2012. She went through various treatment options that were wonderful when they worked. Having to change regimens is a harsh reality for anyone with mets. While my friend did not live as long as I would have liked with mets, there are so many cases with different outcomes. I have lots of friends that respond longer to treatments who are living with mets for a very long time.

Li had a wonderful ability of living in the moment with me on a great day. I’m not saying there weren’t some bad ones but we made a pact that on great ones we would be in the moment.

IMG_3171IMG_5232One of the best days was when Li got her dog Shelby as a puppy after we finished our primary chemo. I am so grateful that she chose me to take care of her dog. I loved visiting her and Shelby so many times. Shelby helps me every day keeping memories of Li alive. She is such a wonderful gift. I know Li would be proud of how well Shelby is doing, while she is a constant source of joy in my life.

There’s not a day that goes by that I don’t think of Li and all my mets sisters living and dying from MBC. I was very lucky that Li let me in to her life with mets and accepted my help. It’s so rewarding to able to help. Li helped me a lot too. She never missed being with me for my many surgeries and I was with her for hers. Having one day for MBC awareness is a start, but we have a long way to go and there should be many more days of awareness for MBC. As patient advocates we have to make metastatic research a priority. We must stop this terrible disease and prevent it from spreading to other organs. This research will hopefully lead to helping end all cancers.