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.

 

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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.

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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! 💝💖💝💖

 

Special Post by Tami Boehmer

This is a very special post by Tami Boehmer. I am reblogging it here, but I will also add the original link:

http://www.tamiboehmer.com/2015/07/no-expiration-date-a-tribute-to-our-angel-krysti-hughett/

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No expiration date:  A Tribute to our angel, Krysti Hughett

Krysti's

Last night, I lay in bed and couldn’t sleep. I didn’t know that my dear friend, Krysti Hughett, drew her last breath just an hour before. Maybe my body and soul could sense it. Krysti passed away on July 7, after more than 10 years of beating the odds of very aggressive stage IV inflammatory breast cancer. She accomplished such an overwhelming task with her determination, incredible intelligence, and tender love and support she  gave to others. Yet I can feel her presence as if she was still here. And in a way she is.

It is no coincidence I met Krysti while she was helping others. It was about six years ago, and Krysti was leading a Young Survival Coalition (YSC) support conference call for stage IV breast cancer survivors. I was fairly new at the game and nervous about reaching out for help. It was then that Krysti earned the moniker I gave her – “resource queen.” She told me about a magical place called Camp Kesem and suggested my daughter would like to attend. Her own daughter Molly had been going and loved it. I signed Chrissy up for that summer and she and Molly (AKA camp name Mo Mo) became cabin mates and fast friends. We’d meet up with Krysti and her husband Bill at camp and have dinner afterward. It became our tradition.

Image 5Krysti was my mentor and friend. She let me in on so many cancer perks I’d otherwise would have not known about. In addition to Camp Kesem, there was a  wonderful mountain retreat weekend through an organization called Image Reborn. You better believe I took advantage of that and passed it along to my breast cancer friends.

Krysti was also my inspiration and fountain of information for clinical trials. Krysti, I found, knew more about them than many of my doctors.  It extended her life and many others  she so freely advised. I once told her she should get paid for the hours upon hours of consulting she provided for so many people. She shot me down of course. Krysti gave with love; money had nothing to do with it.

Every year we met at Camp Kesem, Krysti would joyously announce that she made it another year to see Molly go to camp. She loved that place, and she loved her girls – Molly, Mindy and Megan. We had a special relationship, but I knew I shared her with so many people who also had a special relationship with this remarkable lady. As she said in her final note, she was loved.

Last Thursday, I went up to Indianapolis with my friend Joules Evans for my scan and blood work for my upcoming clinical trial. Afterwards we stopped in and visited Krysti who was at a nearby hospital. We were among many people who gathered at her bedside. Krysti was struggling to breathe but took off her oxygen mask so she could talk to me. I instinctively stroked her head as she labored to speak. I asked if I was bothering her but she assured me it felt very good. I wanted to give back some of that love and caring she so generously shared with me. We reminisced how we met, and she wanted to know about my clinical trial. Her mind was still sharp as ever and she let me know it sounded promising. I told her I loved her very much and she said she loved me.

There seemed to be little left to be said, but as I turned to head out the door, she had one thing to say to me. “Please let everyone know how you’re doing on your trial.” She wanted me to keep in touch with her family and friends. And I suspect, that she will be listening from above as I give my updates. I know on some deep level that Krysti is watching over me and everyone she has loved. She is just next door, in another dimension, but is still helping everyone. I can feel that right now as I write this.

Image 1Krysti’s legacy lives on, and I’m grateful to play a small role in that. Her story is one of the many featured in my book, Miracle Survivors: Beating the Odds of Incurable Cancer. I know Krysti would want you to read it because her story is so encouraging, just like she was in her life.

I’ll leave you with a Krysti quote from my book:  “At one point, I was NED (No Evidence of Disease). I call it No Expiration Date. When my husband got me a handicapped sticker – which I needed because I had a brain tumor at the time – it said no expiration. That’s what I focus on whenever I’m in my car. I want to stamp that on my forehead.”

I know one thing for sure, there is no expiration for the memories and
legacy Krysti leaves behind. Your body may have expired; but your spirit will forever be with us.

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Tami is an amazing person whose story and phenomenal books are incredibly inspirational. After her five-year, cancer-free anniversary she had a metastatic recurrence of breast cancer in 2008. Tami was shocked when One doctor told her, “You could live two years or 20 years, but you’ll die from breast cancer.”
Image 4Tami explains, “I wanted talk with other cancer survivors who didn’t accept doctors’ predictions–people who beat the odds. I was determined to find out how they did it so I could do it myself.  So I started searching for “miracle survivors” nationwide for my book, From Incurable to Incredible: Cancer Survivors Who Beat the Odds.”

Image 6Her new book called  Miracle Survivors: Beating the Odds of Incurable Cancer, was released in November 2014 .You will find all new stories, but Tami again says “it’s the same message: there is hope no matter what the circumstances.

I feel as if I’m fulfilling God’s purpose for me through this work. It has taught me cancer doesn’t have to be a death sentence. Like the people I’ve interviewed, cancer for me was the beginning of a new way of life; one of appreciation, hope, and discovering one’s potential.”

Please learn more about Tami and visit her blog at: http://www.tamiboehmer.com

Things are Looking Up

I truly feel empowered by the amount of love and understanding that I am receiving from my family and good friends as a result of blogging my true thoughts and emotions. I am so uplifted by all the love and support coming my way.

love26gratitudelogo2.jpg?format=500wAfter facing my fears and shedding many tears, there is plenty to be grateful for and inspired about. My fearless friend is strong as an ox. She makes me laugh and my time with her is wonderful. Although she had a very rough week, the treatment is working. She is optimistic and so am I. The-Correlation-Between-Fitness-and-Happiness

While still depressed, I am confident I am on the road to recovering from it. With the incredible help of my family and friends, plus tons of resources, all will be well.

IMG_5839Some days everything looks bleak. But life is full of surprises. I am not alone. It’s time to throw away the pity party and look towards the future. I refuse to let everything drag me down when I have so much love and support that I can count on.

And don’t worry. There is still plenty to write and complain about. But today I am going to live in the moment. I will continue to remind myself to approach each day with ease and joy. Sometimes it’s easier said then done but I will keep on trying.

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.

The Angelina factor

Here is a great post from my friend Tami who has MBC (Metastatic Breast Cancer). What I love most about Tami is while she knows the realities of this disease, she continues to inspire as she shares stories about hope on her blog as well as her award-winning book, From Incurable to Incredible: Cancer Survivors Who Beat the Odds.

I was also sorry to hear about Angelina’s Aunt who died from MBC. Because there are 113 deaths a day from MBC in the US alone, you can also read an incredible Tribute to Maria Wetzel who also died from MBC the same day as Angelina Jolie’s aunt.

We must do everything to continue research that will help those with metastasis stay alive, while we work on ending this terrible disease.

The Pink Fund

Now that some time has passed, I think I can discuss this in a rational manner. There have been varied reactions to Angelina Jolie’s descision to have a double mastectomy after testing positive for the BRCA gene mutation, a hereditary factor affecting a five percent of breast cancer and 10-15 percent of ovarian cancer cases. The cover of People magazine calls it a brave and heroic act. Others call it self-serving and drastic. I just read an article in the Boston Globe, which criticized her for having the wealth and beauty to afford such an endeavor.

My reaction? Sheer anger and frustration. I bristled at all the attention and admiration bestowed upon Angelina, when in contrast I feel the real heroes are the women facing metastatic (stage IV) cancer who  garner little publicity, and worse, funding. I felt furious that so many wonderful women and men, many of them young…

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Donna Peach – Danced in to the Light

donnaLast night , Donna Peach danced in to the light. It is her beautifully poetic expression for those that have died. Yesterday was Donna’s time. Every night I check my email and look for Donna Peach’s blog. She had stage IV metastatic breast cancer and I met her through her blog when I started blogging around ten months ago. Donna was a choreographer and a dancer and because of all my ballet and modern dance training, we became social media #fearless friends immediately. Her incredibly wonderful husband Marvin aka Don also would write on her blog to let us know how she was when she couldn’t.

Last night I was visiting my sister for a holiday and it’s the first night I did not check Donna’s blog. Of course Marvin was there to tell us what happened and to those who are interested in Donna’s blog please click here: at her site: http://donnapeach.com/. Unfortunately she was in the hospital and although she had been in and out of the hospital during these past 10 months, I had hoped she would get better and be able to go home with her incredible husband.

This is the part of breast cancer that I hate. When someone is diagnosed with Stage IV, their disease is not curable but there are various regimens of chemotherapy that can extend life. This is so unfair. The trick is trying to keep quality of life while extending it with regimens that have terrible side effects but are able to extend one’s lifetime.

My focus today is about the beautiful living Donna who participated in so many events with breast cancer social media including her web site and a site where others with cancer can express themselves through poetry and words. To see this great site go to: http://cancerpoet.com/. She always joined our meetings on Twitter with #BCSM (the breast cancer social media community) and I was always so happy to see that she was part of this incredible group.

I was supposed to meet her when the Los Angeles group of the #BCSM community met on a Saturday in West Hollywood, but unfortunately my dog Shelby had a terrible urinary tract infection and her urine was bloody. Leave it to Donna when I wrote her a long email explaining how sorry I was I missed the meeting, she just said not to worry I would see her the next meeting. Although deep down I knew time was getting limited, we all have to live in the moment and make the best of it.

I am frustrated that we have not found a way to help those with metastatic cancer. I have watched too many dance in to the light this way. But for today I just want to remember Donna and the beautiful soul that she was.

I know that sometimes this blog is hard for some. Who wants to hear about death and breast cancer? Yet this is a harsh reality of the disease. When I was first diagnosed I didn’t want to hear about anyone dying from the disease. All we want to hear is that we can be cured and we do what the doctors tell us and that’s the end of it.

Unfortunately when someone is diagnosed with metastatic cancer whether breast, esophageal, lung, pancreatic, colon, etc., many people don’t understand that no matter how much someone tries to grin and bear treatment there is no hope of a cure. There is only a chance of extending life through various chemo regimens depending upon one’s pathology.

I am not trying to be grim. I just want everyone to understand how special Donna was as well as so many I have watched with metastatic cancer that tried as hard as they could to stay with us as long as they could. I hope that through my advocacy this will change. I hope we can find a vaccine to end breast cancer while we learn how to reverse metastatic cancer. Only then will I believe that all of my time and energy was worth it – for truly this is a goal worth achieving.

Meanwhile, dear sweet Donna I hope your beautiful soul is at peace and you can feel all the love that so many of us are sending you.

Happy Holidays! – A Special Memory from Christmas Day 2011- Remembering Li Bailey

Image 4Last year was a very special Christmas Day. My best friend Li had metastatic breast cancer (MBC) and she had started hospice in her home. She had an extremely precious caregiver named Nora who I am still in touch with because she became part of our family. Li didn’t have any siblings and her parents were both deceased, so her best friends were her family, and I was so lucky to be one of them. Li’s disease was progressing and she was having difficulty walking so she needed the help of a walker.

Li wanted to make a special day for Christmas and invited Kathy, Joy and myself to come over to her apartment to celebrate the day. Li was so excited about getting everything ready. We all brought food over and the day before Nora helped her get the table set just the way Li wanted it so that we could all sit together for this great feast.

This was one of Li’s happiest days while being sick. She enjoyed working with Nora so everything was in the right place and LI was meticulous about the preparations. I got to Li’s apartment first and helped her out of bed, brushed her teeth, got her dressed, etc. Then when Kathy and Joy came over we started having our great meal. What meant so much was how we all knew it was our last Christmas with Li and she knew it too, but we were all in the moment.

IMG_3171.JPG - Version 2We took breaks in between the meal  because Li wanted to go through some of her things and share them with us.  We also went through some of her modeling photos when she was 16. She was a sensational model and she was even in Vogue. Joy brought back some “limoncello apéritif” from Italy and we had a set of four little glasses that we each toasted with. Li even had a sip although I know she couldn’t drink all of the drink. I now have those beautiful apéritif glasses and I treasure them with a great memory of that day.

I have to give Li credit. Even though each time she lost more mobility she accepted what was happening and bravely entered each new phase as she got to the end. The hospital bed was the hardest but she was terribly uncomfortable with her bloated tummy from the liver metastases and she realized that the movable bed really was the best thing. When she got in it she was so much more comfortable.

Because Christmas is coming again this year my mind is remembering a lot about the end of last year. I was supposed to go to my Mom’s for the holidays but because Li was starting hospice I just couldn’t leave her and I have the best mom in the world. She told me not to come home and stay with my friend who needed me.

That was another great thing about Li. She made me feel so good because I could help her. Helping others with breast cancer, early stage and any type of metastatic cancer helps me cope and feel empowered since I could do nothing to save anyone’s life, especially Li’s from cancer. One of the biggest reasons I am a patient advocate is so I can help others. That’s why I started my non-profit Advocates 4 Breast Cancer, so I can make a difference.

I am in the process of getting my site up and because it is so time-consuming, I am going to try to blog less so I can get the company up and running. It’s so great to have this blog and I find myself blogging when I am bursting with energy to write about something. This day with Li, Joy and Kathy was so special to us. Our friend was such a gift. Now I must make sure that my voice and work advocating helps others. While I am excited about the National Breast Cancer Coalition’s deadline 2020 to end breast cancer, there is so much else that needs to be done as an advocate and I can’t wait to get this important work moving. I owe it to all of my fearless friends out there and I promise to do my best to make a difference.happy_holidays_slider_900x300

I hope all of you have a lovely holiday and here’s to a wonderful 2013. I started this blog about six months ago, and I thank you so much for reading my posts, checking my daily online breast cancer newspaper, and having faith in me. I hope I can live up to your expectations.

The Relationships we don’t think of when we see the same people every day

My fellow blogger Lori at “regrounding, of chemo, cancer and red, red wine”  wrote a great blog talking about the man who makes her coffee every day at Panera and that she realizes that she sees people every day and doesn’t know their names or wonders about all the people around her that she sees but doesn’t know. When I went to live in Nashville for a few years in between living in Los Angeles, I got used to asking people their names and trying to remember them. I knew my mail carrier, the people cleaning the apartment complex, people at the gym, etc. My postal worker Steve was so kind that when I needed to send my business mail to my home address from my brother’s office because my brother died, he wrote me the kindest note about my brother’s death and wrote me when he was changing his route.

I carried this way of life with me when I permanently moved back to Los Angeles, and I love saying hi to the woman delivering my mail, waving at the UPS man who I also see driving when I walk my dog, other dog owners and their dog’s names, the women who clean and vacuum at my gym, etc. It’s a great feeling smiling at them everyday and asking how their day is going. Sometimes it takes me two times to remember a name, but I do my best.

I think it’s important to take the time trying to get to know the people around you especially as our lives have gotten so complex and we are so used to being dialed in to our work and daily life on the computer. This in no way takes away from the amazing friendships I have made as a result of social media and I cherish the friends I have met online especially when it comes to breast cancer.

I think it is helps me feel connected to my surroundings by acknowledging the people who I run in to most days. There’s an office building I walk by every day when I walk my dog Shelby and I always wave to the security guard at the front desk  as I pass him. One day he was on the street talking and I walked over and learned his name is Juan, so now when I walk by I wave  at him and say “hi Juan”.

Taking a moment to ask the names of people I see often always lifts me up even if I am having a rough day. If you are reading this and it is not your custom or practice, try it. I think you will find the same joy that I do in being surrounded by wonderful people working hard every day to do a service that helps your day or is just someone walking their dog  just like you are.