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.