Maya Angelou said, “There is no greater agony than bearing an untold story inside you.” The healing power of sharing my cancer story compelled me to found WWGN. I'm an inspirational speaker, contributor at CURE and Positively Positive, Huffington Post blogger, support volunteer with Cancer Hope Network, member of the Carol G. Simon Cancer Center Oncology Community Advisory Board, patient educator with Pathways Women’s Cancer Teaching Project, wife and mother, and a former very stressed out lawyer.
If you're in the USA, I hope you enjoy the three-day 4th of July weekend. There is a special place in my heart for small town 4th of July parades and fireworks. They bring me back to my youth and are just the sweetest things.
Which, in addition to the fact that I just celebrated another birthday and watched my niece get married last weekend, could have me feeling pretty old right now.
And yet, I'm feeling empowered and very much HERE, as in present and alive. Maybe it's the love and family high I'm still riding from the wedding. It was such a joy to celebrate with my HUGE family. (My mom, her nine kids, our eight spouses and 17 grandchildren!)
Sure, time is relentlessly marching on. That young mom in the picture is me with my first baby and niece. Twenty years later, those two beautiful babies are brilliant, accomplished, gorgeous women who continue to fill us with love and pride.
Some part of me wants to rail against aging, but I just can't. Instead, all the love and positive vibes of my niece's wedding have me focused on gratitude.
I'm grateful to be here to see another niece married, and grateful for my large, close family - any one of whom I could call if I needed anything and know they would come running.
Which brings me to my brother, the father of the bride. I'm beyond grateful for the moment I shared with him at the reception. After he spoke beautifully of his love and devotion to his daughter, I had to tell him, with tears in my eyes, how I wished I had had a father like him. He hugged me tight and reassured me that I always had a big brother in him. Which made us both laugh, because I'm his "big" sister.
And that's the point, isn't it? I had a lousy father, miscarriages, infertility and breast cancer. I'd be lying if I told you I've never felt deprived, unloved and just plain screwed. But, when I look around and see all the wonders of my life: husband, children, brothers, sisters, mother, nieces, nephews, friends, dancing at weddings, birthday kisses, fireworks, small town parades and the many other joys I'm so grateful for, I tear up a bit and laugh.
Enjoy and be grateful for the "little things." They are the things that create live out loud joy and get us through the big things (like a lousy father, miscarriages, infertility and breast cancer.)
And, ultimately, they are all that matters.
In deep gratitude and wishing you much joy,
PS: Someone at the wedding had the brilliant idea of taking a picture of all nine of us - which I don't think has been done since I was 14. My mom and niece joined my five brothers, three sisters and me. It strikes me that we hit quite a few of my simple secrets from You Can Thrive After Treatment and How to Build an Amazing Life After Treatment. We practiced gratitude, created a sense of wonder, took every opportunity to laugh, practiced mindfulness, and moved our bodies (there was a lot of dancing!)
Photo by Cris Woodbury (dear friend, sister and mother of the bride!)
“You can't always get what you want, but if you try sometimes, you might find, you get what you need.” Mick Jagger
I gave him the full mama bear hug and kissed the side of his head before sending him off with the usual parting words of a mother, “Have fun and be good.”
Only he wasn’t my child.
How did I know he needed mothering at that moment? Simple. He asked.
There were at least 30 of us at a neighbor’s house observing the pre-Junior Prom, picture-taking ritual. My son’s friend was there alone, his mother unable to attend. When it came time to leave for the prom, parents sent their children off with huge smiles, kisses and hugs.
As I released my hold on my son and sent him over to his father, his friend looked at me, extended his arms and said, ““My mother isn’t here and I need a hug too.”
As I hugged my son’s friend (for longer than I thought he would let me) it struck me that I had just witnessed this 17-year-old boy put the formula for getting what you need into action:
Awareness + Permission + Action = You Get What You Need
1. Awareness: You can’t get what you need if you don’t know what you need. Are you as aware of your emotional need for affection, validation, understanding and support (just to name a few) as you are of your physical needs? If not, is it because you don’t think you’ll get them met anyway? If you want to have any chance of getting your needs met, you have to own them. No one else is going to get real about your needs until you do.
2. Permission: Once you’re aware of your needs, do your best not to judge them. Whatever you need is valid and has merit. Viewing our needs through the prism of judgment causes us to shame ourselves into silence and inaction. Had my son’s friend thought he was being silly or juvenile, he never would have asked me for a hug before he went off to his first prom.
3. Action: You know what you need and you know your needs have merit – now take action! Be brave and ask for what you need. You can be subtle or take the direct approach like my son’s friend, but you’re not going to get anything until you come out and ask for it.
Most of us let fear stop us from working the formula to get what we need. We’re afraid we’ll be judged, uncomfortable with vulnerability, or we’ve been rejected too many times before. Plus, fear keeps us playing small, believing we’re incapable of finding creative solutions to getting what we need.
The only way to ditch fear is to acknowledge it and then promptly ignore it.
When I was in the midst of cancer treatment, I was overwhelmed by daily responsibilities. Afraid to acknowledge I needed help, I soldiered on, until it got to be too much. Finally, I talked with my oncology therapist who suggested, among other things, that I simply ask my husband to help me with the grocery shopping on the weekends, rather than continue to do it myself during the week.
When I heard her suggestion, it was like a cloud lifted. Why did I think I had to do it all myself? And, why had I forgotten that we used to do the grocery shopping together every weekend before we had children, simply because we wanted to spend the entire weekend together?
Of course, my husband readily agreed to shop with me on the weekends and we’ve been doing it together ever since. I often joke with him that our big date of the week is going to Whole Foods on Saturday mornings.
Finding the courage to ask for what I needed reminded me that most people, and certainly my husband, respond generously. And here’s the kicker – at the moment the openness it takes to ask for what you need comes together with that generosity, a beautiful bubble of abundance and gratitude is created.
Do you struggle with getting what you need? Have you had the honor of showing up for someone who needed something from you? I’d love to hear about it in the comments below.
I'm going to practice what I preach and ask you to join the conversation in the comments below. I answer every comment and would also love to see you share this post on Facebook, Twitter and Pinterest. Thank you!
Jody, an 11 month survivor, and I met at Relay. Jody attended her first Relay for Life with her entire family (including her sister-in-law whose help was indispensable while Jody was in treatment.) We hit it off immediately as we talked, hugged and exchanged emails. My fellow survivor speaker Dan had an amazing story of multiple cancers. We cut the ribbon together to begin the Relay and walked arm in arm to lead the other survivors around the track.
Many blessings to Jody and Dan, who is expecting his first grandchild at the end of this month!
At the Lourdes Celebration of Life event, I met Ike, Jacquie, Karen, Mel and so many other wonderful people. One woman stopped by to talk as I was signing books to share that she was 90 years old and still going strong despite cancer. Another woman talked about being diagnosed with thyroid cancer just a month before her teenage son was also diagnosed with thyroid cancer. A third woman and her husband spoke with me about TRAM flaps and tamoxifen (something I know a bit about personally.) One man told me about his prostate cancer and how he now chops wood to keep active. Another man was thrilled to tell me he is celebrating eight years as a survivor!
I truly love being with other survivors. It's a joy that never gets old. In fact, I'm so inspired I'm thinking about creating a webinar or e-course so we can spend some time together too! This is just in the planning stages and I could use your help. What topics would you like to talk with me about? How do you think I could best serve you? Would you be interested in a course at all?
These words of Dr. Maya Angelou's have always spoken to me. The raw, unvarnished truth is that we all have stories and we all need to be heard. Finding the courage to tell our stories relieves the agony of silence and frees us to heal. WhereWeGoNow was created on the foundation of this truth. May we all continue to support and encourage each other to tell our untold stories. Rest in peace dear Maya and thank you for speaking your truth.
I have an uneasy relationship with Susan G. Komen. In fact, ever since I was diagnosed with breast cancer, there's been a big pink elephant in the room.
Summer of 2009: I’m between surgeries, down one breast and scarred from hip to hip. I’m having a tough time emotionally and the blanketing of the world with pink ribbons isn’t helping. (I’ll never forget wondering who thought it was a good idea to smack the pink ribbon on Mike’s Hard Lemonade.)
People who love and support me give me pink ribbon pins, bracelets and buttons. I don’t want to hurt their feelings, but the last thing I want is to take on the pink mantle. I cannot lose any more of myself to this disease. The thought of someone meeting me for the first time and immediately associating me with breast cancer just doesn’t sit well.
My aversion to Komen got worse when I discovered bloggers like Rachel Cheetham Moro, who died from metastatic breast cancer at age 42. Her exhaustive accounting of how Komen prioritizes awareness over life-saving research is seminal and sparked a movement in the metastatic community, which is rightfully up in arms.
Finally, the Planned Parenthood debacle, which saw Komen sacrifice its mission to serve underprivileged women to make a political statement about abortion, depressed fundraising and nearly toppled the brand.
And yet, this is the organization that brought attention to breast cancer at a time when people couldn’t say “breast” or refer to cancer as anything other than “The Big C.” This is the organization that mobilized millions to speak up, fundraise and come together to create a community and a movement.
This is the organization that has the heft to actually deliver on its founder’s promise to end breast cancer forever.
Hopeful Komen’s PR fiascoes have led it to a re-examine its priorities, I accepted its invitation to the first, all-expense paid blogger summit in Washington, DC, on May 9th and 10th. My goal was to listen. I hoped to hear an honest acknowledgement of past mistakes and a re-commitment to its mission. I also couldn't miss an opportunity to meet the other invited bloggers, Amanda Hudson, Rene Skyler, Renee Ross, Sam Schuerman, Nicole McLean, Melissa Paskvan, Janice Lynch Schuster and Barbara Jacoby. I wasn't disappointed and spending the weekend with these women was an honor.
The first day of the summit, Komen scholar and research scientist Dr. Neil L. Spector spoke about his work in the field of translational research focusing on developing more effective and less toxic targeted therapies for the use in the treatment of established breast cancer and ideally as prevention strategies in high risk populations.
My ears perked up when Dr. Spector noted that 20 years ago, 40,000 women a year died from metastatic breast cancer and that number hasn’t budged since. He explained that his mission to serve those women and “not leave anyone behind” is personal. Five years ago, Dr.’s Spector’s heart was so damaged due to undiagnosed Lyme disease that he had only 72 hours left to live without a heart transplant. Dr. Spector doesn’t have metastatic breast cancer, but facing death as a young husband and father fuels empathy and guides his work.
The second speaker brought most of the room to tears as she spoke of her passion to understand the mechanisms behind brain metastases as it relates to breast cancer. Komen scholar and researcher Dr. Priscilla Brastianos currently leads a multidisciplinary clinic at Massachusetts General Hospital to provide specialized care for patients with brain metastases. Her hope is to identify new therapeutic targets to treat this devastating complication of cancer, which killed her grandmother and, just three weeks earlier, had killed her mother.
We also heard from two local organizations serving the especially hard-hit and underserved populations of DC and surrounding areas. DC Pink Divas is a patient navigation, training and education program designed to combat the higher than national rates of breast cancer in areas of Washington, DC, and Maryland.
The second organization, Nueva Vida, supports and empowers Latino families affected by cancer, and advocates for and facilitates their timely access to state-of-the-art cancer care.
Last year, I volunteered as an independent grant review panel member for the North Jersey Komen affiliate, which awarded $766,000 in grants to fund 21 programs at 15 local community non-profits. The programs provided such vital services as transportation to care, education, counseling, and funding for wigs and prosthesis. It was moving to hear from the real people running these programs and see actual examples of where the 75% of funds raised by Komen affiliates goes in their local communities.
At the end of the first day, we met with the new CEO and President of Komen, Dr. Judith Salerno. On the job for only nine months, Dr. Salerno expressed a real desire to listen, which encouraged me to speak up for the metastatic community, which needs to be invited to the table and heard. We also discussed pink fatigue and pink washing and our hope that new management meant a new approach.
The next morning, I attended my first Komen Global Race for the Cure on the National Mall, which was ablaze in pink. Head-to-toe pink boas, feathers and funny hats aren’t my thing, but the Mall was awash in a stunning display of community. Fellow blogger Janice Lynch Schuster and I made the three mile walk together. It was a beautiful sight and a real pleasure to be a part of a parade of thousands connected by a cause.
And this is how Komen reels you in. As noted by writer and breast cancer survivor Peggy Orenstein, Our Feel Good War on Breast Cancer glosses over the ugly (dying from metastatic cancer) and celebrates pink survivors, ribbons, products, overstating mammography’s benefits, and “awareness.”
To date, when it comes to “the Cure,” the numbers don’t even come close to supporting the rhetoric. For 2012, the last year for which financial reports are available, Komen raised $428,897,000, of which $69,146,000 was dedicated to research. That means only 16% of the funds raised went to research and, of that 16%, not all of it was devoted to research on metastatic illness.
This is my quandary and, as I confessed to Dr. Salerno, the reason I kept my trip to DC a secret. Although I was heartened by her willingness to listen, and the good work of Dr. Spector, Dr. Brastianos and the community-based grantee organizations inspired hope, until and unless the metastatic community receives its fair share of the pie, I’m just not comfortable supporting Komen.
But I want to be. I sincerely hope and pray that Komen’s new management team, led by Dr. Salerno, can turn the ship and right its course for the good of everyone stricken by this disease.
Survival > Existence,
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This week we've been blessed with many new WWGN members, mostly due to the guest post I wrote for Cure Magazine.
(Right now the iconic Girl Scout song: "Make new friends and keep the old, one is silver and the other's gold," is playing in my head. )
Because not everyone has been here from the very beginning, I though I'd reintroduce a blog post I wrote a while back. This post is about cancer anger and it is the reason I was originally contacted by Cure Magazine and ended up being quoted in an article on anger. It's definitely one of my favorites because it's resonated with so many people:
Coping With Cancer Anger
Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns it all clean. Maya Angelou
The truth is we often consider anger to be a negative and try to avoid it at all costs. The social message is loud and clear: Don't overreact, don't yell, don't curse, don't scream, and don't ever be impolite. Hold it in at all cost. But how do we cope with cancer anger?
As a cancer survivor, I remember a lot to be angry about. Although I never wondered "why me," I did feel anger about changes to my body, loneliness, and having to deal with past emotional traumas stirred up by cancer. I was especially angry when a year had passed since my diagnosis and I was not yet "over" cancer.
I also remember being really angry at the people who wanted to move on and forget about my cancer before I was ready to do the same. I felt alone, abandoned and unheard. As my anger increased, it got too big to share with those same people. The only thing that saved me was being able to voice my anger to my oncology therapist, who encouraged me to curse, yell and be impolite. I know it is only due to her being there for me that I was able to work through my cancer anger and get to a better place in those relationships.
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