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

Welcome to Our New Site!

CLICK TO GO TO WWW.A4BC.ORG
CLICK TO GO TO WWW.A4BC.ORG

Welcome to http://www.a4bc.org! There’s some typos and a few formatting issues that we are working on, so please bear with us!

In meantime, please go to our site, watch our video, and join us to stay in touch.

Feel free to contact us with comments and suggestions below. We love your input. Every opinion and insight is greatly appreciated.

Thank you for your continuing support. Happy thoughts, love and light to all…Susan Z.

CONTACT US:

Seeking Volunteers & Advocates!

Get Involved and Make a Difference!

Please visit our main site at http://www.a4bc.org. There are many features and important information.

We are interested in hearing from anyone who wants to volunteer, get involved and/or seeking employment.

Join Us copyPlease consider volunteering your time. We need help managing office issues, assisting in projects, event planning, fundraising, marketing, social media, action campaigns, and with web site content. There are also small projects that you can help with. Just let us know what you are interested in doing, your time constraints and together we will make it happen.

We also have openings for volunteers and/or scholarships who advocates who want to attend the San Antonio Breast Cancer Symposium, YSC, AACR, NBCC, ASCO, Breast Cancer Symposiums, Metastatic Conferences, as well as other lectures and meetings where we will help pay based on your needs and have you represent A4BC. You can write about your experience at these great meetings. Feel free to suggest one that you are interested in and contact us!

We love our volunteers and staff. Tell us a little about yourself and let us know your interests.

For more information email us:

           susan@a4bc.org

You will hear back from us right away. You can also phone us at: 310-923-2339.

If you can’t volunteer and would sill like to help we also appreciate donations. We also have some opportunities for employment that we are open to discussing!

Donate Graphic 6-25-15

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.

Senate Amendment Threatens DOD Breast Cancer Research Program (DOD BCRP)

US Capitol Dome Houses of Congress Washington DC
US Capitol Dome Houses of Congress Washington DC

TAKE ACTION!

The Senate is currently considering the National Defense Authorization Act for Fiscal Year 2016 (HR 1735). Sen. John McCain (R-AZ) has filed an amendment (#1483) that if passed, would severely restrict the types of medical research that could be funded by the Department of Defense and would serve a devastating blow to DOD funding for Breast Cancer Research. Contact your Senators and urge them to oppose McCain amendment #1482.

Sourced through Scoop.it from: advocates-for-breast-cancer.rallycongress.com

To see the bill H.R. 1735 go to: https://www.congress.gov/bill/114th-congress/house-bill/1735/text

To see HR 1483 go to: https://www.congress.gov/amendment/114th-congress/senate-amendment/1463/text

TAKE ACTION: clickhere  http://advocates-for-breast-cancer.rallycongress.com/18000/senate-amendment-threatens-dod-breast-cancer-research-program-dod/

NAN_header2aThis is a pre-written letter that you can send to let your Senators know how important it is that we don’t lose funding for the very successful Breast Cancer Research Program. funded by the Department of Defense. It only takes a minute to put your name and address in and your email will be sent to Congress.

See on Scoop.itBreast Cancer News

I am in Free Fall but Determined to Climb out of Depression

joyIt’s been the most difficult New Year that I have ever experienced. On a personal level I am trying to approach this year with ease and joy. It’s been two years since Li died and I am drowning in depression. Not sure whether anything I am doing is worth anything. I have never worked so hard without feeling any reward. When I was volunteering at least I felt worthwhile every day helping people right in front of me. I have so many important friends on social media and I have been so fortunate to meet so many special people as a result, but sometimes it’s so hard to keep up with all the information especially as I try to simplify everything.

Meanwhile my very close friend has brain mets and just finished whole brain radiation and it’s just so unfair. I wish the treatment wasn’t so tiring for her. I am so grateful for her friendship and I try to do whatever I can to help but she just doesn’t deserve to be going through all of this. I am glad that we live close to each other and I love getting together especially walking with my dog Shelby to visit.

Twitter : justvisiting123: Why isn't @Jada_FA on the cover ... 2014-02-11 15-01-24Jada my friend on Twitter died at age 34. I only knew her through Twitter. She touched so many of us in the breast cancer social media community. She was so young and beautiful. Here is a stunning picture of her pre-cancer. I did some calculations (hoping my chemobrain math is still working) starting with the fact that there are 450,000 deaths a year from metastatic breast cancer (Source: GLOBOCAN 2008), I calculated that Jada is one of the 1238 people all over the world that died on Jan 28th because of Metastatic Breast Cancer. That’s over 51 deaths every hour.

Pancreatic Cancer Action wish I had breast cancer copy

People have other cancers that are just as important. Yet the Official Pancreatic Cancer Action (PCA) came out with an ad campaign with a bald women’s picture saying, “I wish I had breast cancer.” Many of us connected with social media were outraged. The PCA really doesn’t understand breast cancer statistics. The pancreatic ad also made me sad. My dad died from pancreatic cancer and I know that the disease is usually caught at Stage !V. I did some calculations and discovered that about 22 people die a day from pancreatic cancer in the UK while about 32 women die a day from breast cancer in the UK. I know they wanted to raise awareness for pancreatic cancer but I wish they would come up with a new ad and really raise awareness. Once again we need to be united when it comes to all cancers.

Tamoxifen Brain_1379462921276_3014655_ver1.0_640_480On a personal note I am thinking that maybe it’s the medicine I am taking that is making me extra depressed. I took the awful tamoxifen for five years. Now with the ATLAS and aTTom studies at ASCO 2013, they are recommending taking tamoxifen for ten years instead of five. My oncologist suggested I try raloxifene (Evista) which is supposed to be a “tamoxifen light.” When I first took it, I was amazed that there were no side effects.  But during my third month on it, I started getting non-stop hot flashes again, blurry vision, and feeling horribly depressed.

I am ER+, PR-, Her 2-.  Every study I have read about tamoxifen (for example: http://jco.ascopubs.org/content/23/4/931.long) and PR- when ER+ states that this is known to be resistant to tamoxifen. In San Antonio sitting next to Dr Dana I appreciated when she pointed to the speaker who I believe was Jason S. Carroll, PhD right as he said “ER+/PR- responds poorly to tamoxifen.” Thank you Dr. Dana for acknowledging the research I discussed with you about this, because I have heard different opinions from doctors. Unfortunately the data presented didn’t have the study published. I have suffered with this stupid drug especially being spooked by a recurrence of my breast cancer after not taking the tamoxifen.

Breast-cancer-revelation-other-hormone-receptors-could-be-targeted-for-novel-therapiesI apologize for those who don’t know theses technical things about breast cancer and to those who do since only 3-5% of cases are ER+ PR-. and there are very few studies since it’s not common. I miss being able to talk about all of this with Li. We loved discovering all the important information related to our cases. Because she was triple negative early on we didn’t understand that treatment options are limited. When she started hospice we both laughed at how much we thought we understood about breast cancer at the beginning when we went through chemo together. We both realized how little we knew until this disease took over our lives.

2225The official Advocates 4 Breast Cancer website is coming together, yet we hit an unfortunate snag. Without getting too detailed, we needed to change the domain hosting company to get ready to launch the new site. Our emails had to go with the domain server and due to technical issues some emails were lost and lots of time was spent on the issue. The problem took a huge chunk of time glued to the phone and computer with support, with lost emails and all sorts of computer issues. Today a miracle happened and after having the engineers look in to the issue, crossing my fingers, I put the settings in and the current mail is working. I apologize to everyone who may have tried to contact me and thought I didn’t respond due to having my email missing.

So to recap. I got very depressed taking a medication hoping to avoid another breast cancer recurrence that I am not sure can help me anyway. With research and a note to my oncologist, I just stopped taking the medicine. Now I hate having to consider taking an antidepressant and I hope the new one works. That’s the problem with medications. Each one causes the need for another one and then it goes on and on. I have had problems with many ones I’ve tried because they made me sick.

no-health-insurance-5Time has been lost over these technical problems with the web site. So please bear with us as we iron out issues.I personally have to make going to the gym a priority and make sure I am taking care of myself. It’s so hard with so many problems all over me. I also have to do another surgery on my breast in a few weeks. I could start another rant about my health insurance especially because it’s gone up 40% in price over the past few years including a recent 15% hike. It’s frustrating financially, time-consuming and I know I am not alone. Scorchy wrote a post that had me in tears about her issues and the financial drain called The Road to Ruin. Yet I am so grateful that I have insurance and my awesome plastic surgeon accepts it. She has fixed some previously botched work. This will be my ninth surgery on my breast, but I am lucky I tolerate surgery very well and I trust Dr. La Via. I  love my docs.

PIIS1470204509703201.fx1.smlI am very upset about my close friend’s metastatic cancer and brain mets. I am grateful that she still keeps me laughing even through difficult circumstances. She is amazing. I luckily have lots of support from family and friends and I know that what I mostly need to do is breathe and appreciate things that really matter. I think the hardest part is feeling no control over outside events. It’s such a combination of frustrating events and I just have to pass through this, one step at a time. With all that is going on I know that I must make the most out of every day and not let these things drag me down.

It’s so important to be in the moment and find daily joy in things. So with that in mind I remind everyone reading and myself that sometimes things can get overwhelming. I will trust that everything will sort itself out and try to find joy in things again. It’s best to allow myself to understand that’s all I can do is keep going and know that things will get better.

IMG_5794Luckily I have Shelby and she is a great source of joy in my life. I thank Li every day for the gift of Shelby. I made a silly movie trailer of Shelby with my iMovie program that makes me smile. I couldn’t get the program to make things perfect, but that’s OK. I have to let go of being a perfectionist. I hope it makes you smile.

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.