Connecting with survivors

Connection is what it's about!

This wonderful world of social media has offered me the opportunity to “meet” and connect with other wonderful survivors. One of them is Suzanne Aruta Goldklang. who has a great breast cancer blog called Join our Loop. Suzanne contacted me through this blog and asked me to do a guest blog post. I was featured yesterday. I invite you to check it out – not just for my story, but all the interesting things the blog has to share.

I’ve been busy trying to get the manuscript for From Incurable to Incredible done and to the publisher. Yay, yesterday I finally got everything to them for design!

So now I have time to share some wonderful comments/stories from fellow survivors who have contacted me through the Share Your Story feature on this page.  As you’ll see, these individuals have their own blogs to help others. Here are a few emails I’ve received the past month:

I was diagnosed with breast cancer in June 2008, at 37 years old. My daughters at that time were 3 and 18 months. I had immediate surgery followed with chemotherapy, radiation and lots more surgeries and ongoing treatment for issues that arised from my treatment. I am scheduled to have my (hopefully) final surgery this March. I found it very therapeutic, after the fact, to write my story and then posted all to my new website, http://myjourneythroughbreastcancertreatment.com. I also published several articles about my cancer experience, including information on BRCA, my favorite cancer resources and more at HubPages: http://hubpages.com/profile/lily+rose

I enjoyed reading your story here. Best wishes!

- Lily Rose

As a 34 year survivor of a virulent form of breast cancer I was really pleased to read your story and about your project.

We are a special club that no one sets out to join but are really grateful when he/she find herself a member.

- Val Sena

Thank you for your website, information and help. As someone touched by prostate cancer, and now I am told I have secondary cancer on its way, I find it helpful to provide cancer news to others. My web site, World Cancer Reports www.wocanre.com , is my way of helping others.

- Chris Lavin

Thanks to everyone who comment, share their stories and offer support through this blog and Facebook. We’re all in this together.

What I took today …

Gag me with a pill!

There are some things in life that make me go hmmmmm–like the popularity of a local blog here called What I Wore Today. I don’t get it, but I guess I’m not their target audience. Most days I’m in my sweats sitting at my computer.

Anyway, the blog inspired me to do today’s post. When I tell people I take a bunch-and I mean a bunch!-of supplements, they ask me what they are. Really, I can hardly keep up with them! I was taking plenty already, then I started seeing Dr. Gary Huber, and the list grew longer. I look at it as a big chemistry experiment for which I’m waiting to see the outcome.

While I hate choking them down, I feel grateful that I have a course of action that makes sense. Remember, everyone is different, and Dr. Huber customizes supplements to each person. Mine are designed to treat my estrogen/progesteron-positive breast cancer and all the weird things happening in my body that promotes it.

With that in mind, here’s what I’m taking today (and every day):

• Multivitamin (no iron- iron has strong oxidizing properties, which can fuel cancer growth)
• CoQ10
• An Osteoporosis formula, containing D, B6, Magnesium, copper, etc.
• Magnesium
• Vitamin D, 5000 IUs
• Probiotic
• Chromium
• Chlorella
• Alpha-Lipoic acid
• Filter and Flush (yes, like a car place), containing a blend of milk thistle, dandelion leaf and other things to flush out the liver.
• Dinodolylmethane (DIM) for estrogen metabolism
• Avemar (see previous post about that)
• Cod liver oil capsules
• Bioidentical progesterone cream
• Heavy Metal Detox suppositories (twice a week – that’s more information than you want to know!)

This is just a brief  listing, and remember this was customized for me, using a variety of lab work and other testing. I will follow up with subsequent posts to talk about the benefits of some of these listed above. I will probably ask Dr. Huber to chime in, because I’m certainly not a medical professional.

With that out of the way, I’m going to tell you what I’m wearing today… Just kidding!

Letting mortality be our teacher

As you can see, Maria brought her humor to the chemo suite.

People come here for hope and inspiration, so sometimes I’m hesitant to address some of the sad things about this cancer journey. But I’d be lying if I said this is always an easy road.

I lost another friend to cancer this weekend. Maria was the first person I went to when I was diagnosed with breast cancer in 2002. She worked with me and had just finished treatment herself. She was the only person I knew who could explain from experience what chemo and the rest of the journey was about.

Maria possessed the gift of humor. Sometimes it was kind of bawdy and inappropriate, but she kept it until the end. As recently as a month ago, she forwarded me a hilarious email full of pictures of dogs dressed  in awful outfits with the title, “Why dogs bite their owners.”

Today is her funeral and I just thought she deserved a spot on my blog. I always told her I was going to write about her, which is why I asked her to send this picture. So now I am.

Once again I’m reminded how blessed I am to be able to hear and share all the stories in my book.  At times like these when cancer, as my husband said, “is like a battlefield,” we have these stories of hope. I can think of  people like Dave Massey, Mary Jacobson and all the other Miracle Survivors and know anything is possible.

I am grateful to people like author Bernie Siegel, MD, who gave me the inspiration to write about these outstanding individuals, whom he calls “exceptional cancer patients.”  Bernie Siegel is a pioneer in the body-mind-spirit approach and wrote the best-seller, Love, Medicine and Miracles. I highly recommend it if you haven’t already read it.

As those of you know who have followed my blog for a while, I’ve been trying to get Bernie to coauthor my book. He was interested, but his agent didn’t bite. He did graciously agree to offer his comments, which I’ll include on the cover and as a foreword. Here’s some of what he had to say:

“From Incurable to Incredible is a book that everyone should read because it is filled with the wisdom of those who have confronted their mortality and let it become their teacher. When we learn to nourish our lives, we pay attention to our hunger for living. We use it to guide us to heal our lives; curing our bodies is a side effect.

Self-induced healing is not an accident or a spontaneous lucky occurrence. It takes work, and the work is learning to love ourselves, our life and our bodies. When we do that, our bodies do the best they can to keep us alive. I would recommend that you read this book before you are threatened by illness and thereby live a longer, healthier and happier life. Remember life is uncertain, so do what makes you happy and eat dessert first.”

Dreams do come true

Paul and his parents get chummy with George on Air Force Two

Call it the power of intention, the law of attraction or simply blessings…whatever it is, I’m sure reaping the benefits of it.

A year and half ago when I was toying with the idea of doing a book, I doubted I was even worthy of considering it. Now it’s months away from becoming a reality. Each step of the way, I’ve been amazed at all the opportunities and gifts coming my way. 

Today I learned that I’ve been approved for a therapeutic mountain retreat for breast cancer survivors. It’s taking place in Park City, Utah, this summer. I found out about the wonderful organization that hosts it, Image Reborn, at the Young Survival Coaliton’s conference in Atlanta a couple of weeks ago. 

There’ll be massages, makeovers, chef-prepared meals and fun with fellow survivors! They even fly you out there!  They are a great organization and certainly deserving of support, so check out their site.

It has been my intention for a long time to finally explore some national parks out west, especially after seeing a recent PBS series on them. Mike and Chrissy will join me after the retreat, and we can do just that! I also hope I get to meet Evan Mattingly, one of the great people featured in my book. and maybe do some PR and a book signing.

I guess it’s kind of a “Make a Wish” trip for adults. Last night, Miracle Survivor Paul Falk came by with photos and memorabillia from his “wish trip” to Washington, DC, organized by Cincinnati Dreams Come True . More than 20 years ago, Paul, then 9, spent a lot of quality time with Vice President George H.W. Bush. I paged through his scrapbook containing notes Bush Sr. wrote to Paul and his family. And there were pictures like the one above taken by the official White House photographer.

Bush and Paul made a connection. Paul explains Bush took such an interest in Paul because he had lost a daughter to leukemia. It was his way of “paying it forward.” Paul says he’s excited he gets to do the same by sharing his remarkable story in my book.

We’ve heard of the book called, Why Do Bad Things Happen to Good People. I think I’m going to write one called, Why Do Good Things Happen From Bad Things? I have plenty examples.

More news from Young Women Affected by Breast Cancer conference

The gang from Saturday night dinner

Whew! I’m finally coming up for air after being out of town, then a solid week of editing my book.

I am still coming down from the excitement of attending the Young Women Affected by Breast Cancer conference. As a Pink Ribbon Girls scholarship recipient – and new board member – I have the task of sharing what I learned.

In a previous post, I shared my first day there. The second day was chock-full of information. The first keynote was a medical update from Julie R. Gralow, MD, from University of Washington School of Medicine and Seattle Cancer Care Alliance. She shared some hopeful developments, such as more targeted treatments for various cancers, especially HER2 nu and triple negative varieties. 

As someone who’s neither (I’m ER/PR-positive), I found it a little disheartening that there wasn’t more for people like me, which make up the majority of breast cancer cases. She did share they have found a way to make Taxol and other drugs water-soluable, which would eliminate the need for anthihistimines or steroids and also make them more effective for metastatic patients. As someone who has suffered through the puffiness and insomnia of steroids, this was welcome news.

She talked a lot about trials for PARP inhibitors for triple negative cancers, which seemed promising. If proven effective, she predicted it could be approved for advanced breast cancer.

After Dr. Gralow, Pink Ribbon Girls (PRG) president, Tracie Metzger gave a brief presentation. All of the PRG contingent sat up front to support her. We were so proud! Then, Julie Rowland, PhD, Director of Cancer Survivorship at the National Cancer Institute, spoke on lifestyle factors related to breast cancer. A lot of her presentation seemed pretty obvious to me: good nutrition, exercise and stress management all improves quality of life and survivorship.  What I found really fascinating though was that many of her recommendations mirrored the common attributes of survivors I interviewed for my book:

• Being an active participant in your care
• Relying on a support network
• Having a sense of purpose
• Seeing the positive gifts of cancer and living more fully

My final breakout session, Let’s Talk About Sex, was interesting. Why wouldn’t it be? Sharon Crews, a psychologist from Atlanta, talked about the struggles we survivors can face and how to overcome them. There was talk of vibrators and mindfullness meditation, using the mantra: “My body is alive and sexual.”

She was very clinical about all of it, but at several points, people got up and left. One woman admitted she left because she was uncomfortable and came back. After attending the PRG Pure Romance fundraiser Friday night, this all seemed very benign to me!

The night ended with a very fun and moving dinner with PRGs and other survivors we invited to join us. Andrea Bashor, our host for the evening, even invited the speaker Michael Baime, MD, who presented the Mindfulness Meditation breakout. He held up well, despite being the only male among almost 20 women!

It was a great time and I look forward to attending next year. For more information, visit www.youngsurvival.org

Calling all angels: Imerman Angels

Jonny wears his T-shirt everywhere he goes to spread the word about Imerman Angels.

As I was saying in my previous post, I had a great time at the Young Women Affected by Breast Cancer conference this past weekend in Atlanta. I don’t think I’ve ever been anywhere with so many women in one place.

So imagine my surprise when I boarded the  hotel shuttle and the first person I saw was a guy-Jonny Imerman. Jonny is one of the incredible survivors featured in my book. I first met him at the Annie Appleseed conference in January, but had heard a lot about his organization on the Internet. I’ve learned that Jonny is absolutely everywhere promoting his organization, which matches long-time survivor mentors to newly diagnosed individuals.

I teased him that he would be getting a lot of attention from all these young women at the conference. But Jonny is truly focused on his mission: to match individuals with someone the same age, gender and cancer. So no one has to fight it alone.

Diagnosed with testicular cancer at age 26, Jonny knows first-hand how difficult  it is to find someone who understands. When his cancer returned in the lymph nodes near his spine, he had extensive surgery and learned it would take a while before he was out and at the gym again.

Although he had supportive family and friends, he could not find one other young testicular cancer survivor.  When he recovered, he started recruiting long-term survivors to mentor other survivors, and Imerman Angels was born.

Now we have five full-time employees and more than 2,000 survivors in our worldwide network. We get really fired up; we want to do so much more. People try to brave it alone when they don’t have to. There are so many survivors out there who want to give back and inspire others. They have already been down the same road and are coming back to the starting line to help others get to the finish.

It’s important to get those positive stories out there. There’s a Lance Armstrong for every cancer, someone whose doctor said, “You’re not going to make it. You have maybe six months or a year.” Then years later, they are doing great. Our job is to get that Lance Armstrong hooked up with someone who has the same disease, and say “Here’s a guy who did it; you can do it, too.”

 Our five-year goal is to have a match for everyone within 24 hours who is the same age, gender and cancer. There are lots of hugs and high-fives around our office. We get so excited when we match someone up. Our survivors are clearly changing people’s perspectives. That’s what gets us stoked and motivated: knowing we’re making a difference.

For more information, visit www.imermanangels.org.

Oh, the places you’ll go! YSC conference, Enquirer article

My friend Jocelyn from Pink Ribbon Girls and I enjoyed dinner in Atlanta with almost 20 others Saturday night.

This weekend, I had the honor and privilege of attending the 10th Annual Conference for Young Women Affected by Breast Cancer in Atlanta. The event, sponsored by the Young Survival Coalition and Living Beyond Breast Cancer, attracted more than 900 women from around the nation.

My friend Ashley Oehler (who took this lovely picture) were among four recipients of the Pink Ribbon Girls’ (PRG) Anquionette Williams Memorial Scholarship. As you might remember, Anquionette was a friend and fellow PRG member who passed away this year. It was so fun hanging out with my PRG friends, seeing other people I’ve met both online and offline, and meeting so many other fabulous women there. Thanks to PRG for sponsoring my trip!! If you want to learn more about PRG, visit www.pinkribbongirls.org.

I have so much to share; it’ll take several posts to cover it. The first session I attended was “Creative Coping: Using Creative Arts to Heal Body, Mind and Soul.”  The presenter Edna Bacon, an art therapist, began by talking about a Dr. Seuss book On Beyond Zebra, about creating your own letter of the alphabet. We were asked to tear up pieces of construction paper to create our own letter and share what it meant to us.

It was so powerful to hear women expressing themselves. There were tears and laughs. One very young woman used her piece to demonstrate all the ways she is different: being young with breast cancer, gay and deaf. Another woman spelled out the F-word to describe her relationship with cancer.

My creation evolved into a 3-D “letter”with pieces of paper sticking up all over the place. I shared that it represented how cancer has been an upward battle, but my life has been exploding with blessings. That includes getting to go to the conference, exciting developments with my book and my improving health and opportunities to contribute to that.

Another blessing was my first big piece of publicity for my book: a story in the Sunday edition of  the Cincinnati Enquirer READ.

The talk at the conference reminds me of another Dr. Seuss book, The Places You’ll Go, which speaks to me these days and hope gives you boost, too:

You’ll look up and down streets. Look ‘em over with care.
About some you will say, “I don’t choose to go there.”
With your head full of brains and your shoes full of feet,
you’re too smart to go down any not-so-good street.

And you may not find any
you’ll want to go down.
In that case, of course,
you’ll head straight out of town.

It’s opener there
in the wide open air.

Out there things can happen
and frequently do
to people as brainy
and footsy as you.

And then things start to happen,
don’t worry. Don’t stew.
Just go right along.
You’ll start happening too.

OH!
THE PLACES YOU’LL GO!

Heading off to Atlanta for the YSC conference

Me and Mike in Atlanta last month for my cousin's son's Bar Mitzvah. This weekend will be fun, minus the Torah readings.

I’m heading off for my girls’ weekend, Pink Ribbon Girls, that is. Thanks to my lovely group of gals for sponsoring me to go the Young Survival Coalition conference in Atlanta.

I’m looking forward to spending time with my buddies, as well as learning more about breast cancer research and issues. I’m really excited about doing some networking and meeting some of you I’ve met online.

If you’re there, look for me and say hi. I’ll be the short, dark-haired girl who’s giving  her card to everyone she sees!

On another note, several people have asked me about how to purchase the book when it comes out. If you want to make sure you’re first to know, I’m starting a mailing list. Simply go to the contact page and let me know if you want to be on it. I’ll shoot you an email right away when the book is hot off the press!

See y’all later!

In memory of Heather

Heather Ray

As I write this, I am thinking of Heather Ray. I learned last night that Heather passed away. You might remember me mentioning Heather in previous posts. She was the beautiful, strong “miracle woman” who I saw in the chemo suite. She only had one leg (she lost one to bone cancer as a child) and aggressive breast cancer, but that didn’t stop her.

If you live in Cincinnati, you might have seen her on billboards this fall, pictured with two teammates for her Susan G. Komen fundraiser, Spinning for a Cure. Yes, even with one leg, Heather spinned her way to top physical condition, raising thousands of dollars for breast cancer research while she was at it.

It seems like just yesterday I was gabbing with her in the chemo suite, looking at pictures of her beautiful daughters dressed up in Halloween costumes. But the last time I saw her, she was in a wheelchair and in terrible pain.

When I first met her, I asked if she would be in my book, but never heard back from her. In my eyes, she was a miracle survivor and always will be. She will be greatly missed.

At the same time, I am busily preparing for the release of my book this spring. I meet with Beth, my editor, on Monday and will soon send it off to the publisher to lay out. Amy, an Enquirer photographer came today to take my photo. And Peggy O’Farrell the reporter called to ask me more questions about my cancer journey. It was difficult to tell my story once again, but I felt good to be able to share the actions I’m taking to build a healthy future.

This all seems trite looking at Heather’s situation. But it seems more important than ever to spread the word through this book and blog. People need to know that there are many survivors out there who are beating the odds every day. I know I certanly need to hear these stories to balance out the bad news like I’ve received this past couple of days.

I called one of the incredible people in my book, Yvonne Cooper, today to express my frustration over seeing another beautiful young woman dying from this disease. She reminded me that I’m on a mission. Thanks for supporting me in carrying this mission out.

A banner day for PR opportunities

Getting the word out

Yesterday, I was feeling a little down for some reason. I think it’s because I wrote my last story for my book. Don’t get me wrong, I was thrilled to have it almost done, but it was a little bit of a let-down, too. It has been such a healing experience and honor to hear and help create these remarkable individuals’ stories. Luckily more stories are coming in through this blog, so I’ll have more to share with you here.

Today was totally different. I realized that now I have the freedom to promote the book. Being in public relations all my career, this is something that comes to me naturally. I get pretty stoked about it – so excuse my upcoming rambling.

I had a phone interview with Peggy O’Farrell, the health reporter from the Cincinnati Enquirer, and she is going to run a story about the book in Sunday’s paper! It will feature me and some of the local survivors who are featured in the book. It’s not often that I literally jump up and down with excitement, but today I did!  I didn’t expect I’d have a publicity opportunity so soon.

In addition, I was contacted by a friend at our local chapter of the Susan G. Komen Breast Cancer Foundation to give a talk at Miami University next month.  I will be sharing my experience with young women and the message of the importance of being proactive about breast health no matter what your age.

And I found out that some of my story will be weaved into a play featuring  breast cancer survivor stories called Voices (AKA Boobs on Broadway).  The play will premier in Washington DC this October. It won’t mention me per se’, but will include some details of my experience. I’m just happy that I was able to help (in a small way) a super project that will raise funds to help under-served women and cancer research. 

Here’s the link that talks about the play: http://www.voicesbc.org/index.html. I hope to meet the producer when we go to Washington this spring and share more about the production in a future blog post.

My biggest thrill is the opportunity to share the message of hope and healing these stories convey with people who really need it. It’s not about me; it’s about the mission of this book. I’ll share the Enquirer article once it runs, but if you’re in town, make sure you check it out.