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.

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.

Hope from the NBCC Deadline 2020 Advocate Summit and Lobby Day

As I returned home from the NBCC (National Breast Cancer Coalition) Advocates Summit and Lobby Day to end Breast Cancer Deadline 2020, I was really happy I went. I have to admit I had so many reservations going. I labored over my decision. I thought I was going to fly home with “Frustration – Part Two.” There’s been a lot of people angry with the NBCC because of issues about putting MBC (Metastatic Breast Cancer) under the bus literally. My fearless friends have real reasons to be upset. Here is an organization that has educated so many women who have had to hear the words “You or a loved one has breast cancer.” They have an incredible program called Project LEAD which is an intensive six-day course teaching the science and very important advocate issues about breast cancer.

MusaSmI have learned a great deal from Project LEAD, LEADcasts, summits and attending Breast Cancer Symposiums that stemmed from first learning with the NBCC about breast cancer. Great scientists, researchers, doctors and leaders of breast cancer advocacy taught me the grim statistics that now in the US alone 108 women die a day of MBC (metastatic breast cancer). That’s one woman every 14 minutes. There are also men but the stats are less. In 1975 there were 112 deaths a day in the US from MBC. It’s 2013. Four less deaths a day is not much progress when it comes to death rates.

So here was my dilemma. The NBCC who taught us about the death rates has a campaign to end breast cancer in 2020. So what happens to the metastatic patient while they figure out how to get a vaccine to end breast cancer?

There has been a lot of differences of opinion within the breast cancer community and understandably so. If you are only preventing breast cancer and preventing metastatic breast cancer what of the person diagnosed as metastatic. The very people they say they are helping…Are they really helping them?

I went to symposium expecting to come home finished with them. But my mind was open. I saw that Musa Meyer was going to the conference. She is the head of the advanced metastatic breast cancer organization. She is committed to the advanced breast cancer community and through her website http://www.advancedbc.org and the BCMets,org online community Musa focuses daily with BCMETS.org by helping women with MBC and their families understand treatment options and emerging research.abc

There was also an impressive line up of speakers. Dr Dennis Slamon gave a great talk. He is best known for being instrumental in the identification of the Her2/neu oncogene and the resulting treatment of tratusunab (Herceptin) which has been hailed as the first triumph in an emerging wave of targeted therapies. Some other speakers included Dr. Susan Love, Dr. Michael Baum, Dr. Peter Lee, and Dr. Barrett Kramer to name a few. In my next post I will be writing more about what some of these speakers spoke about.susan-love-cancer-20130213-001

Shirley Mertz of the MBCN (Metastatic Breast Cancer Network) was also at the conference. If leading metastatic breast cancer patients and their organizations were getting behind the deadline, and I have always supported the NBCC, I owed it to myself and Advocates for Breast Cancer to attend and make up my mind.

The most moving plenary session I attended was called “Effectively Targeting Metastasis in Breast Cancer.” First Shirley Mertz spoke to us, endorsing Deadline 2020. She talked about the differences between early stage breast cancer patients and MBC. 80-90% of all breast cancer patients start at early stage breast cancer. Early stage can be anything from DCIS (ductal carcinoma in situ) which is pre-cancer and a little more complicated but for this post I will leave the explanation as that. Early stage cancer can also be cancer that is contained in the breast where someone might only need a lumpectomy or a mastectomy and/or radiation depending on the size of the tumor and whether there is lymph node involvement. Otherwise another early stage breast cancer is when the cancer travels to the lymph nodes and the patient could have a lumpectomy, chemotherapy and/or radiation and/or a mastectomy but the most important thing to understand about early stage is that one is told they have a 70% chance of survival and many do whatever treatments that are recommended or they feel will work and after treatment some prescribed medications depending on their pathology. Some also choose alternative therapies. For most early stage patients, when they “finish primary treatment”  and are told they have NED (No Evidence of Disease) they can have the chance of knowing they may be “cured.” Then they are told they have a 30% chance of a metastatic recurrence that can happen at any time, but at least there is an end point to the treatment. Of course there are many side effects and I am oversimplifying “treatment” as an end point but I am trying to show the differences between early stage breast cancer and MBC. MBC is chronic and so far there is no known “cure”.

IMG_5124Shirley explained about how she goes for chemotherapy infusions and where she goes there are early stage patients getting chemo and when they get their last treatment they have a special bell and everyone celebrates their end point of chemotherapy treatment. When one has metastatic breast cancer there is no end point to treatment so Shirley remembers the joy of knowing there was an end point but unfortunately for the MBC patient this will never happen. There are also people with inflammatory breast cancer which is an unbelievably aggressive form of breast cancer that many do not survive. Again for simplicity I am just trying to show the many differences that exist in breast cancer diagnosis and treatment options.

After Shirley Mertz, Suzanne Faqua PHD continued talking with us about the science involved and critical issues in metastasis research. Suzanne is a professor in the Lester and Sue Smith Breast Center at the Baylor College of Medicine. She specializes in metastatic research especially working with hormone positive MBC.

She explained the way current science recognizes the need to study not only the primary tumor but looking at the similarities and differences of the heterogeneity of a metastatic tumor. As we look at the critical issues in metastatic research our approach is important. For optimal targeted therapy we must identify key pathways (key drivers), block the pathway completely, anticipate escape mechanisms and block them too, and explore combination therapy. She talked about studies related to PIK3CA status in blood, liquid biopsies, circulating tumor cells and how we must do targeted therapies in human trials. Her talk had some of the complicated science involved with tumor dormancy, including the fact that there aren’t current dormancy-cell killing drugs in clinical trials. This needs to change.

Some of her personal perspective of the critical issues in metastasis research includes the need for us to get the pace moving. We have to change the dogma that “The horse is out of the barn” so we can prevent metastasis. There is a lack of clear “drivers” to target. Suzanne also spoke about how important it is to now understand the metastatic tumors and be able to collect tissue samples from biopsies of metastatic tumors and analyze them. Apparently there is a problem within the research community where the researchers want to study the tissue samples from metastatic tumors and how there is difficulty getting theses samples. The woman sitting next to me said she gave her samples and is disappointed that researchers aren’t getting their samples. Another problem is funding. Negative funding will slow and halt progress. That’s why Lobby Day was so important and we also need to keep the program at the DOD (Department of Defense) going so we continue vital research especially when it comes to metastasis.

The NBCC is going to have a special meeting in June with scientists, doctors and metastatic breast cancer patient advocates to study metastatic breast cancer and tumor dormancy. The science is complicated. But someone explained to me that the basics are if the scientists can take the metastatic patients and get their metastatic tumors to go back to sleep and not spread any further, they can go on to live with the disease for many years. The best way I can understand and explain it is that with AIDS they have not found “the cure” but they have found medications that allow people to continue to live with AIDS and they can live for a very long time.

This information is very important to me. I know I have written about the death of my best friend from MBC who survived and thrived through primary chemo with me and lived as long as she could with triple negative MBC. I have so many friends with metastatic breast cancer now, and met some really special new friends at the conference and I have written about how upset I am that they need to have more money dedicated to metastatic research.

One of the difficult things in the breast cancer world is that different organizations have different agendas. Sometimes there are clashes. I am someone who wants everyone to work together. I believe in teamwork. It is the spirit of teamwork that helps me understand the mistakes of the past with breast cancer and pink culture yet try to move forward with my advocacy.

This is what I gained from the people who are committed to deadline 2020. Advocates are working in every way they can to see an end to this disease so that we don’t have to have our sons and daughters hear the words “you or a loved one has breast cancer.”pink_425x320

I understand that some people are moving on from the NBCC and others like me and many of my new friends that I met in DC are supporting the NBCC. For those that don’t want to support them, please know I understand your point of view and I am not going to tell anyone they have to feel the same as I do. This was my experience at the conference. This is what I went away feeling that I am doing what I believe is right for myself and my organization. I am passionate about my advocacy and making a difference with breast cancer and nothing will change that. I hope that one day this horrible disease can be contained and women can go on to live happy productive lives with the most quality of life that they can as result of the scars that come with this disease.

I respect that others see some of what the NBCC is doing with a different lens. When it comes to our passion and intentions, we are all on the same side. What is most important is that we respect each other and work towards ending this disease in every form while we continue to place much emphasis on metastatic research.

Setting a deadline is always a good idea to set goals and try to reach them. Had we never set a goal to get a man on the moon we never would have footage of Neil Armstrong stepping on the moon and saying thDepartment_of_Defense[1]e famous words, “One small step for a man, one giant leap for mankind.”

Lobby Day was also important to get bipartisan agreement and congressional representatives to sign “The Accelerating the End of Breast Cancer Act”, H.R. 1830, and that we continued to get the funding support for the Peer-Reviewed Department of Defense Breast Cancer Research Program (BCRP).

I also met some amazing new fearless friends many who currently are metastatic and have such interesting stories. As we all know it is our unique stories that move us to understand more about this horrible disease and fuels us to do whatever we can to help one another in this land of cancer.

I am so glad I went to DC and came back with all of this hope as well as meeting great new friends. The Summit was so much at once and my only criticism is that they packed in so much that we didn’t even have a break during meals because there were speeches and meetings during the whole time. Even though it was exhausting, the Summit was really worth it. Hope is a great thing to have in our lives.

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.

Valerie Harper Inspires

I am so touched by Valerie Harper. As I am sure my readers are aware , not only is Valerie an incredibly accomplished actress, but her warmth and grace has been so touching during this terrible diagnosis of leptomeningeal carcinomatosis, a rare condition that happens when cancer cells invade into the fluid-filled membrane that surrounds the brain. She has been told by her doctors she will likely be able to survive about three months.

I had the good fortune to meet Valerie at a hair salon that I used to go to. She was always down to earth and always friendly while at the salon to others. When I thought her appointment was ahead of mine she told me it was not and that I was to take my turn.

valerie-harper-00-300She has bravely gone on television, visiting The Today Show, The Doctors, The Talk, Good Morning America , and spoken with People Magazine. Each interview had her glowing with life accepting her diagnosis when you know she is in shock. It is so wonderful to see such a loving relationship with her husband.

She is also a lung cancer survivor. She never smoked. So many lung cancer survivor’s never  smoked or quit a very long time before their diagnosis. I think that lung cancer is the cruelest of all cancers because so many people assume it’s only from smoking and I know many people who have had or are living with lung cancer and they are all non smokers. It’s a disease that deserves no blame. There is a campaign around lung cancer where we attach the words, “no stigma”. Meanwhile Valerie caught the lung cancer early and survived it.

Now she faces such a difficult diagnosis. We see her looking healthy and beautiful and as so many with metastatic cancer do. People are surprised because they not look as though they are very ill especially at the beginning of their diagnosis. Different cancers at different metastatic stages are like that and each one has a different set of statistics for how much time a patient has a chance of living. With my close friend Li when she was metastatic we often talked about living through the dying and making the most of the time we have. Like Valerie we wanted quality of life, not quantity.

There is a wonderful article by Donna Kaufman in I Village that talks about the 10 most inspiring things we’ve learned from Valerie Harper that I am going to copy and paste here. Valerie’s courage and willingness to share this private part of her life with all of us teaching us so much is just beautiful.

The 10 Most Inspiring Things We’ve Learned from Valerie Harper

1. Don’t blame yourself for tragedy. “If you die, you’re not a failure,” Harper said on Today. ‘You’re just somebody who had cancer. And that’s the outcome.”

2. Live in this moment, right now. “I’m not dying until I do,” Harper told Today. “I have an intention to live each moment fully.”

3. Remember that death is part of life. “I really want Americans, all of us, to be less afraid of death,” Harper said on The Doctors. “Know that it’s a passage, but don’t go to the funeral before the funeral. While you’re living, live.”

4. Let yourself be sad — but stay hopeful. “I don’t mean this to be Pollyanna! I allow myself the grief,” Harper told Today‘s Savannah Guthrie, when asked if she ever felt sad. “What I’m saying is keep your consciousness, your thoughts open to infinite possibility and keep yourself open to miracles.”

5. Don’t give in to despair when there’s more pasta to eat. When Harper first heard her diagnosis, she said on The Doctors, “I broke down. I absolutely sobbed. I let myself do it. Then I said, ‘Okay, you’ve been the drama queen. Now get over it and make the pasta.'”

6. Deal with your battles in the way that makes sense to you. When one of the Doctors asked Harper why she was spending her final days on a press tour, she responded, “Dr. Travis, this is not for everyone. This is my way of dealing with it.”

7. Don’t live in denial. “I’m trouble,” Harper admitted in a video message for People, “but when the smoke clears, I’ll be standing. Until I’m not. And I’m ready for that, too.”

8. Don’t forget to live just because you’re dying. “‘Incurable’ is a tough word. A lot of people were calling — ‘Can I come by the house?’ ‘Are you in a wheel chair?’ — because they hear it as this death sentence,” Harper said on Today. “Which it may be. But I’m not dying until I do. I promise I won’t.”

9. Never be afraid of what’s next. “I don’t know what’s ahead, but I’m ready for it. Onward!” Harper told fans in her People message. “I love you. And know that I’m okay. I am okay on this venture.”

10. Keep your loved ones close. Harper says she’ll be spending her last months with her husband and daughter while she undergoes treatments to try to slow the progress of her disease. “My doctor said it’s incurable — so far,” Harper said on GMA. “And I love that possibility. We all need to live in infinite possibility.”

Valerie speaks of how important it is not to blames oneself for a cancer diagnosis. She talks about living in the moment and not focusing on the dying. She says to deal with your battles in your way. For her it was going on Television and speaking to her fans. Most important she speaks of keeping family close. Even though she knows that her disease is “incurable”, she still lives in a world of “infinite possibility.”

Her message is one of so much hope for so many that have faced incredible obstacles in their lives. I just love everything about Valerie!

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.