Know a powerful breast cancer survivor? Nominate them for Pink Power Mom!

Me and some of my 2010 Pink Power Mom friends at the Kids II fifth anniversary gala. Left to right: Mary Ann Nilan, Hillary Sweet, Linda Blair, me, Cindi Hart and Wendy McCoole. (Not in attendance: Lydia Dody and Dolly O'Neal)

I have had some exciting opportunities along this cancer journey, but I’d have to say that one of my highlights was when I was chosen as a Kids II Pink Power Mom in 2010. Not only did they treat me and my husband Mike to a fabulous weekend in Atlanta and $5,000 to a charity of my choice; I met lifelong friends, with whom I felt an immediate connection. I was additionally blessed the following year to be a part of their fifth anniversary weekend. where I reunited with my friends and met Pink Power Moms from previous years, all who share the passion of helping fellow breast cancer survivors.

The Kids II Foundation, through its annual Pink Power Mom (PPM) weekend, honors sand celebrates the ongoing work of eight  breast cancer survivor moms and their philanthropic endeavors. The eight women selected as Pink Power Moms receive $5,000 for the breast cancer charity of her choice, as well as a weekend in Atlanta filled with pampering, educational forums and gifts. Each mom will also receive a legacy donation of $1,000 annually for four years thereafter for the breast cancer charity of her choice. Since its inception in 2006, the Pink Power Mom program has provided support to more than 55 breast cancer charities focusing on services, research, education and legal support.

Sponsored by Kids II, a global leader of baby and infant products, the PPM  program includes women from all over the country who are involved in life-changing charities. Their forward-facing mission is to provide support,educational guidance and a cohesive network of fellow PPMs in order to enhance and develop their own nonprofits. Because of their passion to help make a difference in their communities, Kids II has made a commitment to sharing their stories with the world. The program is funded by The Kids II Bright Starts Pretty in Pink Collection.

Now you can nominate an amazing breast cancer mom (perhaps yourself?) as a 2014 Pink Power Mom! Simply click on this LINK, and fill out the online form. This year, they’re putting an emphasis on military moms, but of course all survivor nominations are welcome! The deadline is June 30, 2013. The annual Pink Power Moms are announced in October, with its grand weekend event the following February.

New hope: Cancer research seems to finally be gaining momentum

A closer look at cancer research

It seems like for the longest time, cancer research was going nowhere. For decades, breast cancer treatments have been comprised of the same old toxic brew of chemotherapy options. I still see it happening. I’m shocked when I see newly diagnosed patients given pretty much the same regimen I had back in 2002. Adriamycin for God’s sake – that stuff almost killed me!

But there are signs that the targeted treatments the research community has been promising are finally seeing the light of day. Treatments, such as Perjeta (which is working for my friend Darlene) and TDM-1, have made a huge impact on the lives of my friends with HER2-positive breast cancer. And there are now new drugs for people like me with hormone-positive breast cancer, which accounts for 3/4 of all breast cancer cases.

Take Afinitor, for instance, which I am now taking. Afinitor, which was just FDA-approved last summer, is intended for post-menopausal women whose cancers have developed resistance to ‘hormonal’ treatments. It  targets the PI3K/AKT/mTOR pathway, which is hyperactivated in many types of cancers. mTOR is a protein that acts as an important regulator of cell division, blood vessel growth and cell metabolism.. Studies show that blocking mTOR is a proven approach to maximize the benefit of existing advanced breast cancer treatments. In less scientific terms, it’s working for me. My last scans actually showed regression, which hasn’t happened in a long time.

Immunotherapy drugs, are now making their way through clinical trials. My husband sent me a link to a New York Times article about developments in this area. The new drugs work by disabling a brake on the immune system called the programmed death 1 receptor, or PD-1.  The drugs show great promise for melanoma patients, but also could be used to treat other cancers.

My miracle friend and Internet celebrity, Darlene Gant

The fabulous Miss Darlene!

I’ve gotten to know some pretty amazing people on this crazy cancer ride, and I’ve shared a lot of their stories here and in my book.  But I’d have to say my friend Darlene Gant has one of the most dramatic stories of any I’ve heard. Perhaps it’s because I’ve seen it remarkably unfold over the past several years. I feel like I’ve had at the privilege of personally witnessing a miracle.

I met Darlene at the Annie Appleseed CAM for Cancer conference about four years ago. Darlene was on a speaker panel sharing how she used alternative methods to beat back cancer. She, I and three other metastatic breast cancer survivors bonded and continued to keep in touch. Tragically, two of the women — Ashley Oehler (with whom I traveled and roomed) and Eleanor Alston — passed away in the years that followed. Then Darlene got sick … really sick.

I remember checking Facebook in March 2012 while I was waiting on a hair appointment and seeing Darlene’s heart-breaking video. Darlene was entering hospice. Her liver was shutting down, and the end seemed inevitable. Darlene was talking to her husband Brian about signing birthday cards for 11-year-old son Cameron, one for every year after she died.

“I started crying and told Brian to turn on the video camera,” Darlene says. “I wanted to show the raw face of cancer.”

At first, she wanted the video to be shown after she died to help motivate others to donate for a cure. But a friend talked her into not giving up and posting it on YouTube as a plea to gain compassionate use for the then-experimental drug, Perjeta. Darlene didn’t qualify for its clinical trial, and she saw it as her only hope.  The video went immediately viral. with more than 120,000 hits, prompting more than 70 news outlets worldwide, including CNN and the Washington Post,  to cover her story. She soon received a call from the FDA, saying they were willing to give it to her; it was the drug’s manufacturer that was the hold-out. After a grueling battle, Darlene received the medication on April 27, 2012, and started to see immediate improvement.

Still, the battle was not over. Her liver was riddled with tumors and not functioning. Surgeons at Moffitt Cancer Center in Tampa skillfully threaded drains around the lesions to release the built-up bile and empty it into a bag that was her constant companion. It was not an easy procedure; she nearly died from it. At first she was told she would never get the drain out. Most patients either get it removed in a few weeks or die from infection. Determined, Darlene created her own regimen to keep the site sterile, and every six to eight weeks went into surgery to have it replaced.

As promising as Perjeta was, it has an average of three-six month progression-free survival rate. It rarely shrinks tumors. Last month, Darlene had a scan, which showed amazing results: not only had her liver tumors decreased; new, healthy liver tissue was growing. And finally,16 months after placing them, her surgeon was able to remove her drains. She awoke from the short surgery to a team of doctors with tears in their eyes. It was nothing short of miraculous.

Darlene tells me that Moffitt has changed some of their protocols regarding stage IV patients as a result of her case. They no longer give up on patients because they statistically aren’t supposed to make it. Doctors and administrators have stopped her in the halls, telling her how many thousands of patients she has affected by her determination and advocacy.

While Darlene credits her amazing doctors, she also attributes prayer, energy work, eating whole organic foods and keeping stress to a minimum to her amazing recovery. She did, however, ease her diet restrictions on Memorial Day by hosting a big barbecue pool party at her house. She sported a cute two-piece baring her tubeless and bag-less midriff. It was what she had dreamed about all these months – getting into a bathing suit and enjoying the sun.  That and dancing at Cameron’s wedding someday. I’ll be there, Darlene, with bells on.

There’s no such thing as false hope

Me in the '90s BC (before cancer) on a trip to Yosemete. Little did I know what mountains I'd have to climb and vistas I'd see.

I had a great experience being interviewed on a BlogTalk radio show, Because Hope Matters, hosted by Maryann Makekau and Rob Harris this week. The hosts were extremely well prepared and asked some probing questions. As happens sometimes when I participate in a good interview, it made me address issues in an in depth way.

When I first wrote my book, From Incurable to Incredible and started this blog, I never imagined that anyone would be offended by or feel marginalized by my message. But I started to hear from a few people who wondered by writing about people who beat the odds and what they had in common, “What about the people who have done everything possible and still die before their time?” I was able to address this issue, among many others, during my interview.

Absolutely, there are no winners and losers, when it comes to cancer. When someone dies, they did not fail in any way. I have been blessed to know some amazing men and women who made a tremendous impact before and after they succumbed to cancer. Ironically, I tell stories of people who have shown No Evidence of Disease (NED) for years, even decades. But I still deal with active disease, like many other people I know. I used to think I somehow have failed; or did something wrong when a scan showed progression. If only I took more supplements — or less supplements. Maybe I wasn’t positive enough. I know now that is just ridiculous.

I have learned to live well with cancer. It doesn’t matter what a scan says. As long as I’m living, I’m going to try to make a difference and enjoy life — with or without NED.  My goal is to give people (and myself) hope by showing there are cancer survivors who are living way beyond what their prognosis indicated. It’s not false hope; it’s just hope. And it’s sure better than hearing a death sentence and preparing yourself to die.

Will everyone embrace this message? One of the people I plan to feature in my next book has had NED for 11 years since being diagnosed with metastatic breast cancer. She shared her experience on a closed metastatic breast cancer Facebook group, I was shocked when people started criticizing her and questioning the validity of her recovery. I decided to leave the group.

As I talked about in the interview and has been expressed by many other survivors. The most important thing is to live in the moment and fully participate in life, regardless of the length of it. I have a low tolerance for drama and people who suck my energy and do not value me for the person I am. I’ve learned to say no to things that are not life-affirming and yes to things that are. Maryann called this living life boldly. I never thought of it that way; to me, it’s  living life in a sane and happy way. I choose to live mine with hope and purpose. I think it’s something we all can do … with or without a life-threatening illness.

Time on fire: A review

Time on Fire gives us an in-depth look at the good, bad and the ugly of cancer care and its aftermath.

I don’t often do book reviews on here, mostly because I get flooded by requests from them. But a pitch from Evan Handler’s publicist about his book, Time on Fire: My Comedy of Terrors, caught my eye. Yes, I admit, I’m a huge Sex and the City fan and loved Handler’s character Harry. So I was a bit star-struck.

Handler was diagnosed at the young age of 24 with leukemia, just when his Broadway and film acting career was taking off. He had a full head of hair then before treatments killed his hair follicles. To be honest, I wanted to stop reading it after the first few chapters. Handler came across to me as a big complainer and a bit dramatic at first. Take this observation about his first chemo treatment as a nurse was trying to distract him before sticking him with a needle: “I thought this must be how animals feel, moments before they are expertly slaughtered, never having quite enough time to figure out what has been done to him.”

“Please!” I thought. “What a lame analogy! I’ve been stuck hundreds of times and love my chemo nurses. It’s no big deal; they are just trying to do their job!”

As I continued reading, I could see where he adopted that attitude. He describes the horrific care and indifference he experienced at top-rated Memorial Sloan Kettering Cancer Center in NYC, where he was not only discouraged having any active participation in his care; he was disparaged for doing so. As a reference point, this all took place in the mid-80s. Hopefully things have changed since then, but I doubt this book will hold a place on Sloan Kettering’s gift shop shelves.

As I read on, I actually began seeing how Handler was way ahead of his time, taking his arrogant doctors to task, asking plenty of questions, and advocating for the best care from his health care team. Like me, he was doing everything in his power to get well. He sought second opinions and after much research, went to Johns Hopkins for his bone marrow transplant. I could identify his quest for body-mind-spirit solutions, absorbing the teachings of pioneers Carl Simonton and Bernie Siegel. His early enthusiasm gave way to skepticism, however, as he saw fellow patients die from the disease and experienced his continuing decline.

There’s humor, too. Like his description of a 300-pound, sweaty phlebotomist who put everything in his mouth, much to the horror of the immune-compromised Handler.  And there was the Evening of Elegance, a fancy meal which rewarded patients for making it through the bone marrow transplant and being discharged a month or two afterwards. He had a setback right before his promised evening and, in his delirium, screamed at anyone who would hear. “F*&^ you! I’m not going anywhere until I get my Evening of Elegance. I’m not going anywhere until I get my f#@!ing filet mignon and my  G-ddamned parfait sundae!!”

After a harrowing five-year medical journey, Handler did beat the odds. But it is not the fairy tale ending you’d expect. He and his long-suffering girlfriend break up, not withstanding the toll the experience had on their relationship. Handler had trouble at first adjusting to post-cancer life. And he was sometimes rejected for parts because of the risk associated with hiring someone recently dealing with a dire cancer diagnosis. And then, there’s the hair that never came back.

But toward the end of the book, I could relate to him most. Handler describes how he was surprised how he went back to many of his old ways after he got well, but some things had changed dramatically. He speaks of being a miser with his time, not wanting to give up his days to things that don’t mean something to him personally. And he relates the loss of innocence of having to look death in the face at such a young age and seeing friends pass away. While he does not always feel it, being reminded of his brush with death helps him appreciate the exhilaration of being alive.

As someone with metastatic cancer, I’m constantly reminded of my mortality and that of my friends. It really sucks, but I sure am happy to be alive. I’m also happy I read this book as it made me examine my own attitudes toward my cancer experience.  I’d recommend this book, especially to readers affected by leukemia or just want to get the scoop on Harry from Sex in the City.

The gift of giving back

Me and Ann Fonfa at her annual Annie Appleseed conference. Ann, a metastatic breast cancer survivor, started her organization to educate survivors on integrative and alternative cancer treatments. Ann doesn't earn a salary; just satisfaction from helping others.

“There’s tremendous power when you shift your perspective from a place of suffering to one of service. If you feel that you’ve ever been a victim in your life, it’s time to change that belief right now. When you look at all of your past hurts, big or small, as an opportunity to serve others, you’ll become a powerful creator.” – Michael J. Chase

I saw this quote on Facebook recently, and it struck me how true this has been for me even before I had cancer. My mom gave me one piece of good advice. It was when I was a teen and felt depressed. She suggested I go out and volunteer to get outside of myself and help others. I started volunteering at the local children’s hospital and have continued finding ways to serve to this day. Since being diagnosed in 2002, and especially since my stage IV diagnosis, my passion is serving other breast cancer survivors.

One thing I’ve learned is that you get back ten-fold what you give. It’s an endless circle. I receive; I give, and so on.  I have been helped by so many people during this journey and have had the honor and privilege of helping others. I feel so blessed and connected. Yesterday one of my friends, who is also a cancer encourager and helper, asked me if I could talk with a women who was newly diagnosed with metastatic breast cancer. I immediately said yes.

As I spoke with this woman, I felt the spark of connection. She sounded so sad and stressed, and rightly so. Her husband left her right before her diagnosis, and she was left alone and with financial difficulties to boot. All I did was listen, share my experience and offer some resources and reason for hope. At the end of the conversation, she told me she felt better and was glad she spoke with me. That helped to dissipate some self-pity I was feeling that day over a family situation.

I remember when I was first diagnosed, how important it was to talk to someone who was further down the road I was and doing well. It meant everything to me. Now I can be that person to someone else.  I believe that is what God put us on this earth to do, and it somehow brings some meaning to this disease.

Almost all the people featured in From Incurable to Incredible either started a cancer support organization or volunteer/fundraise for existing ones. I was so inspired by one of them, Jonny Imerman, that I became a volunteer mentor for his organization Imerman Angels. I see it in other circles other than cancer – when people face a tragedy and use it as an opportunity to help others.

I could argue that this sense of purpose that can actually keep people alive when all else fails. A Facebook friend, Shay Sharp, just posted a message from a woman who was getting ready to go into hospice, but is alive and well a year later. The woman’s  husband said that she was so busy volunteering for Shay’s cancer organization, that she had no time to be sick! It kind of reminds me of a story Bernie Siegel, MD, tells about a gardener who Bernie thought would not make it but came in for a check-up years later. The gardener told him he was so busy “making the world beautiful,” that he had no time for illness.

The beauty of this is that anyone can benefit from the act of giving. It doesn’t have to take money or energy; it can be as simple as reaching out to someone and offering encouragement. By doing this, you can free yourself from the “victim mode” and become a “powerful creator.”

My best birthday present ever

Jumping for joy!

Anyone with metastatic cancer and their loved ones understand the anxiety awaiting and getting scan results. Every three or four months, I lie still for 20 minutes in a tube, resisting the urge to itch, then wait a couple of days to pick up the results. Many people wait until their doctor’s appointment, but not me! It’s one way I can lesson my stress and gain power back in this often powerless journey. The results of the scan will determine if treatment is working or if I have to plunge into the world of trying to decide what to try next and worrying I’m running out of options.

I had a feeling of dread going into this scan as some dear friends of mine have had bad results. Not only was I heartbroken for them; I was scared for myself. I started noticing pains that weren’t there. I started going down the path of thinking that maybe I’m just resistant to all treatments. But my 50th birthday was this past weekend and was delightfully distracted by the joy of making it to the mid-century mark and celebrating appropriately (or inappropriately if you count the two margaritas!) But Monday, first thing in the morning, I was back to the tube.

So today, I waited until my daughter came home to go pick up my results, thinking she might be a good luck charm. As luck would have it, she didn’t want to go with me. Brushing superstition aside, I went alone.

I want you to be the first to know (besides my husband and daughter) that I just picked up my scan results. The Affinitor and Aromasin combination is working! Actually the results are quite remarkable! Every lesion has decreased in both size and SUV uptake (how they measure treatment response on a PET scan).

I was at first worried because it was two pages instead of one, but there was a lot to report. Probably the biggest change is in my right armpit, where my recurrence was first spotted. You could actually feel the lump, but my massage therapist told me last appointment she couldn’t feel anything. On my previous scan, it was 2.2 x 2.7 cm with an SUV4.5. It is now only 12 x 14 mm and an SUV of zero!!! Some spots on my last scan have literally disappeared or cut in half.

With all the progressions I’ve been through, I’m cautiously optimistic. I don’t know how long this will work, but I’m thrilled that it is and relieved to have a break from switching and deciding on treatments. This means for four months I can live my life as it has been on a drug regimen that has given me very few side effects. It’s a reprieve, and I’m so grateful. I was crying tears of joy on the way home, thanking God for this gift.

Thank you for your prayers and support! It means the world to me and I believe that it has played a big role in my healing. Hope you’re having a happy May Day! I sure am!

Kicking back cancer, cowgirl style

Kristie and her family circa 2011

“It may pop back up from time to time but we’ll just deal with that when it comes and kick it back hard each time! And who knows what the future of medicine will bring? I’m hopeful with all the research and money being spent that the cure will be found in my lifetime. ”

These were the first optimistic words uttered by Kristie McFarling on her CaringBridge page after her first chemo treatment in December 2010. Kristie was just 31 years old when she was diagnosed with stage IV breast cancer right off the bat. At the time, cancer had spread to her lymph nodes, liver and bones. Her daughter Ava had just turned one and her son Thomas was four. The adventurous young woman, who has traveled to Costa Rico and Australia, was in for the trip of her life.

The first oncologist she saw was “all doom and gloom,” so she switched oncologists. She was pragmatic, as Kristie describes her. “She told me that I may read the life expectancy is 2 1/2 years, but I’m young and healthy, so feel free to exceed everyone’s expectations.”

Guided meditation: a healthy way to be driven to distraction

We went here - Hidden Beach in Fajardo, Puerto Rico. I returned during a guided meditation.

I’m in an interesting space right now – the blissful stage between scans. Right now I can almost forget I have cancer. I’m taking Affinitor and Aromasin, two oral medications to target the estrogen driving cancer. Sure I go into my oncolgist every few weeks for a checkup and get blood drawn, but I don’t have to deal with infusions. I am fortunate that I’m not experiencing many side effects, with the exception of a bloody nose and occassional acid refux. I don’t want to think about cancer; I just want to live my life. Those of you with metastatic cancer can probably relate.

It is still in the back of my mind, however, and I’ve been driven to things to distract me from it. I have added an obsession to  the games Words and Scramble with Friends to my Facebook habit. I tell myself I’m doing this to sharpen my chemo brain. I watch TV, I sometime compulsively eat … anything to numb myself from the fact that my life does not appear what it seems to be. I know in a couple of weeks, I’ll have another scan that will either show that what I’m doing is working or that it isn’t, forcing me into the medical muddle of making a decision what comes next. I simply don’t want to think about it.

This was obvious to me at a recent visit to my in-laws. A well-meaning and sweet individual asked how I was doing. Instead of saying, “Fine, how are you?” as I should have done, I gave her a medical update. And then she asked “where is your cancer now?” Ugh! I see the pained looks of people surrounding me. I don’t know if it’s out of sympathy or if they don’t want to think about it either.

It pays the bills … for breast cancer patients

Pink Fund founder Molly MacDonald and James Denton. Lucky girl!!

A few years back, I had the pleasure and privilege of meeting Molly MacDonald, a breast cancer survivor, advocate and amazing fundraiser. I learned about her organization, The Pink Fund, which provides short-term financial aid to people during active breast cancer treatment – giving them time to fight, heal and get back on their feet.  At the time, the program was only available in Michigan. Molly asked me to blog for the organization and told me she had big things in store – expanding the program nationwide. I figured it would take a really long time to jump from serving one state to the entire country, but little did I know that in less than two years, Molly and her team reached their goal.

In her relentless search for funds so breast cancer patients can focus on healing; not bills, Molly found a generous partner: The Ford Motor Company. Ford Warriors in Pink^®, the Ford Motor Company program that raises awareness and funds in the fight against breast cancer, has created a limited-edition T-shirt inspired by film and
television actor and supporter in the fight against breast cancer James Denton. For every shirt sold, 100 percent of net proceeds go directly to the Pink Fund, providing real help now.

Imagine my surprise upon reading my beloved People Magazine and seeing a full-page ad with the hunky actor of Desperate Housewives fame sporting the T-shirt and stating his support of this great organization!

“The last thing someone with breast cancer needs to worry about is how they are going to pay their bills,” says Denton. “With the muscle of Ford Warriors in Pink behind the Pink Fund, we think we can really accomplish something for people.”

The dark gray, V-neck T-shirt inspired by Denton showcases symbols of a warrior and illustrates the fight that it takes to battle the disease. Available now, exclusively at www.fordcares.com, you can buy this limited-edition T-shirt to support the Pink Fund. Newly added as a charity partner to Ford Warriors in Pink.

Would you like a chance to win a free T-shirt? I’ll pick one lucky reader who comments here. Tell us a little about yourself and why you think the Pink Fund is important to breast cancer patients.

For more information about The Pink Fund, visit www.thepinkfund.org.