INFLUENTIAL PERSON 2010

Have you taken a moment to think about the most influential person in your life in 2010? And, have you told that person how influential that person has been?

While I’m always curious about who Time Magazine’s Person of the Year is each winter, that moment always gives me pause to think of who has influenced my life during the year. I’m thankful that this year has been filled with SO MANY amazing people who have helped me breathe easier and be inspired daily. There is, however, one person who created an opportunity and program that affected my life this year.

 

This year’s (the inaugural) Influential Person of the Year is…..

Sue Friedman, Founder and Executive Director of FORCE (Facing our Risk of Cancer Empowered)

Dr. Sue Friedman was practicing small animal medicine in south Florida in 1996 when she was diagnosed “out of the blue” at age 33 with what appeared to be sporadic breast cancer. At the time, she was unaware of any familial risk factors for hereditary cancer. After her treatment, however, Sue realized from an article about hereditary breast cancer that she had several indications for a mutation. She pursued genetic counseling, and in 1997 she tested positive for a BRCA2 mutation.

Shocked that her health care team didn’t alert her to the possibility of being at high risk, and disappointed at having to make critical treatment decisions without knowing of her mutation, Sue acted so others could benefit from her misfortune. She founded FORCE in 1999 to fill the information void for individuals and families with hereditary cancer, and to help them advocate for themselves.

With FORCE, no one needs to face hereditary breast and ovarian cancer alone.

 

My sister, Grace, had met Sue a few years ago at one of the first FORCE Conferences in Florida. That was long before I even knew or admitted that I was BRCA+. I remember accompanying Grace to Florida — she went to the conference; I went shopping. I knew nothing about BRCA. After all, denial and ignorance were powerful tools. It was there that Grace talked about meeting a woman named Joanna Rudnick who was screening a first copy of her film “In the Family.” Little did I know this would be a film that I would watch dozens of times over the next few years and then screen at my work.

 

In 2010, almost 1/2 way to my mastectomy, I was still unarmed with information about being BRCA, what it meant to be BRCA, or the surgery itself. In mid June 2010, Grace called me and said that she was flying to the FORCE conference in Florida; she asked me if I wanted to join her. I knew that I could not afford to fly to Florida, stay in Disney hotel, nor take the time off from work.

 

That’s when my phone rang.

“Hi, Liza. My name is Sue Friedman, and I am the Executive Director of FORCE. Your sister Grace told me that you are BRCA, considering your surgery, and that you would benefit from coming to the conference. I’d like to offer you a full scholarship — flight, hotel, meals, registration — if you would join us.  I’m on the airlines website right now and we can pick a flight for you if you say ‘YES.’”

 

Wow.

 

Within a week, I was on a plane headed to Florida.

 

Little did I know that this trip would change my whole outlook, attitude, and “toolbox of information” about being BRCA.

 

Immediately upon entering the conference, I met women who felt like Sisters. We shared something in common. We shared a genetic risk and a common experience. We would speak in language and heart that others could not quite understand; and we would both cry and rejoice in the same sentences. At the conference, I met young women who had been diagnosed with ovarian cancer and fighting for their lives. I met young women who were diagnosed with breast cancer and just finishing treatment. And, I met young women like myself — previvors — who were trying to beat Cancer to the punch. While I’ve known women who have had cancer, it was shocking to see so many young women already affected. And, it was powerful to hear from older women who repeatedly gave the advice, “If I had only known earlier that I could have reduced risk through surgery, I would have done it.”

 

It was at the conference, too, that I would see my first look at Post-Mastectomy Breasts. In a “Show-and-Tell” session, women let others see their mastectomies and/or various types of reconstruction. While this was difficult for me to do, I left with a new sense of bravery, courage, and peace.

 

It was here, too, that I felt my words had meaning. For no less than a dozen times, women approached me and said, “Wow, you’re Liza! I’ve been following your blog!”

 

At this conference, I learned about ways to reduce my risk, about physical recovery and emotional recovery, health, diet, and friendship. I also began to learn about my risks of ovarian cancer — the next leg of my journey.

 

Post-mastectomy, I have been more active on the FORCE Community Message Board where I am now both reading and contributing. Post-mastectomy, I feel more connected to my BRCA sisters; We have battled the same beast and won.

 

While there have been so many incredible people in my life, particularly this year, I owe a great deal to Sue Friedman. For, without her, without FORCE, without the conference and ongoing support from women who also face a genetic risk, I might not have the strength; I definitely would not have the knowledge.

Thank you, Sue, for your tireless work in support for people who have a genetic risk for breast and ovarian cancer. You made life easier to breathe.

Peace, love, and finding thanks,

Liza

PS Want to share YOUR influential person and give them a public shout out? Feel free to comment below and share the link!

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CONNECTIONS

So, bear with me.. a lot has happened this week, and I’m writing on pure emotion right now. I’ll do my best to be eloquent (heck, I’m gonna do my best to spell-check…), so here goes!

Connection. There is a serious connection between my interest in running and my interest in running partners. I have to admit, I haven’t run in a long time. I was definitely in a groove for a while, but now, with this awful cold in my head and chest, I’m just not that interested. Truth is, I’m not that interested in running this next 1/2 marathon. Yet, the connection between “Marathon Before Mastectomy” and actually seeing it through is too significant for me not to do it. I’d hate to look back — 20/20 hindsight — and think “Damn, finishing that second 1/2 marathon really pushed me to heal faster, think more positive, and embrace the struggle with being BRCA.” But, right now, those are words in my head, and not quite motivation in my heart. So, for all those readers and friends who have commented, “I don’t know how you do it, Liza!” or “WOW! You’re so dedicated, Liza!”, the truth is, I’m not. I am your classic Exercise Drop Out. And, especially since I haven’t seen the scale move in 9, almost 10, months, very little of me wants to keep going. I want to give up. I wish I could type some very cool and inspirational ribbon on this one, friends, but I just can’t. It wouldn’t be honest. And that honesty really sucks right now.

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Connections. I went to graduate school in the “late 1990′s” (damn, that was a long time ago!), and was surrounded by amazing people. Certainly, I always assumed we’d all go into the field — higher education administration — and we’d all cross paths again as college directors, college deans, and college presidents. As I connect with people on Facebook, I realize that very few of us are still in the field. Some have become actors, some are directors of non-profit agencies, some are consultants, authors, and work-at-home parents. I recently became connected again to one of my classmates, Jennifer Carriere Spock. Jennifer and I stayed connected a bit longer after graduate school because she took over my job after I left Wesleyan, and I was fortunate to stay in touch with her for the next few years. But, Jennifer left higher education and took the leap to follow her heart. Jennifer blossomed into an artist.

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Connections. I opened my front door to find a package in an 8 1/2″ x 11″ box. Upon opening it, an article fell out about a BRCA author who had recently released a book. Still inside the box, however, was the true gift. It was a painting called “Brave Girl” that, in a small way, this MB4M journey inspired. Jennifer created photo cards and prints from her custom art piece and asked if she could donate 50% of her sales to an organization of my choice. “FORCE,” I wrote. “FORCE gave me the gift of education, sisterhood, and confidence.” Sisterhood. From there, Jennifer created another custom piece of a diverse representation of women with the pink and teal colors symbolic of breast and ovarian cancer awareness (I got a sneak peek, but it’s not ready yet for worldly glory! Link to follow soon!). She is now a featured artist with FORCE. Though she is giving proceeds of her paintings, the true gift is in her art. She is an environmentally responsible artist, a wonderful woman, and an amazing human being.

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Connections. I met with the plastic surgeon today. My brave husband, Jorge, accompanied me on this very stressful journey, and I am so thankful for his

The rough sketch of my mastectomy (with a random other boob mid-hip! hah!)

support. As we spoke to the surgeon, turns out he is very familiar with Jorge’s current school because his wife is starting her own school. Even before talking about surgery, tissue expanders, drains, and recovery, we were sharing common ground — a connection — of education and interest. Immediately, my anxiety decreased.

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Connections. There are a few connections that are causing me some fear and anxiety about even making them. I met with my friend and colleague, an attorney, who gave me resources for getting my will, estate, and proxy in order prior to surgery. Not a connection I wanted to really face, but I know it’s an incredibly important one. I also contacted my singer-turned-photographer college friend, Jessica Haynes McDaniel, who will be taking family photos for us in a few weeks. When I was at Richard’s funeral, what struck me most was the beautiful family portrait he had taken with Becky, Tracey and Toby prior to his passing. I stood in front of that photo for over an hour, just thankful that they had that memory together. These connections, especially these two, are joyous and important, and yet, it would be dishonest of me not to call out the morbid overtones of it all. So, there it is.. morbid overtones mentioned. Moving on….

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Connections. My daughter, Joli, started a new school this year. And, unfortunately, she was picked on by an older student right away. Joli has a physical disAbility – a prosthetic eye – that is noticeable because her eyelid above her prosthesis lays lower than her eyelid above her “seeing” eye. This older student decided to get in Joli’s face and call attention to it — to the entire school yard. For a week, we talked about how “different is special” and how “kids sometimes don’t know how to ask about your eye.” We also talked about what to do if this little girl decided to get physical with Joli (cue Jorge’s Queens, NY upbringing). Each day, for more than a week, I asked Joli if the girl was bothering her. She hesitantly replied, “No.” Today, Joli came home from school to tell me that she actually played with that girl at recess today. She mentioned that the girl asked about her eye, again, but this time the girl “asked nicely. Kinda like she was interested, you know, Mom?” From that moment, I decided to become interested in what my kids were doing. Notorious for texting while they are talking to me, typing while they are eating, or doing laundry while they are doing homework, I rarely share “common and interesting moments” with them. I’m not talking big ones — soccer games, karate practice, pick up from school. I’m talking little ones, the ones that matter. The ones that they’ll remember long after they’ve grown up. The ones they’ll think about when they are parents, too.

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Connections. I’m starting to process the connection between my anxiety about surgery, my lack of interest in running, my increased interest in my family, and my desire to be a better mom. I’m processing the connections between wanting to shut down and scream, crawl into bed and run away, laugh and cry. I am connecting wanting to live with the reality of dying. Thinking positive and embracing the negative. With honoring the fear, and moving on with courage.

The time is here, now, friends. I began this blog back in January 2010 with a surgery date of June. Then November. And, now, November is no longer some nebulous time frame. November 18th is my date.

From now until November 18th, I have a range of doctor’s appointments and tests to run prior to surgery.

I have a range of emotions to feel and to not feel. To dismiss and to embrace. To be both scared and afraid. Courageous and anxious. Fearless and terrified.

And, through this all, I thank you for being my connections.

Getting ready to meet with the plastic surgeon. Yes, in a paper gown.

Peace, love, and 59 days,

Liza

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FORCE 2010: NEW BEGINNINGS, OLD FRIENDS

So, I did it. I went to the FORCE (Facing our Risk of Cancer Empowered) Conference.

If you’ve been following in the past week (which is when my decision to go all came about), I’ve been feeling a great deal of anxiety about attending this conference. First and foremost, thank you to my sister, Grace, who worked closely with Sue Friedman (founder of FORCE and amazing woman!) who generously gave me a full scholarship to attend the conference. It’s clear, even before meeting Sue in person, that FORCE is her passion, and making sure that people have experiential education is one of her priorities. Even in the first few emails between Sue and me, she always signed off her emails as “Hugs, Sue”. That’s the kind of friendliness — family feel — with which she approaches her work and her life. Thank you, Sue. And, thank you to Barbara and the entire FORCE family.

At the onset of my trip, I had gloomy feelings that I wasn’t supposed to be there. It all started with my 13-hour ordeal in the Boston airport due to cancelled flights and continuously postponed flights. I was supposed to arrive in Orlando in time for a beautiful reception and meet-and-greet. Needless to say, I arrived at 2:00am and was to be at the conference by 7:30am.

The good thing about getting there at that time, though, was that I was exhausted. And, having to deal with the drama of the airport meant I didn’t need to truly address my anxiety about going to the FORCE conference. I arrived. I fell asleep. And, next thing I knew, I was sleepwalking to the shower and getting ready for the day.

My sister Grace has not arrived, yet, so I had to anxiously go to the conference myself. Thankfully, when I did arrive, “Grace” was there with me:

I went to go and get a bagel and saw this:

Throughout the day, I saw a few more:

on a brochure

on a tri-fold presentation board

and on the cover of a book!

So, I guess my “family” was there with me already! Definitely made for an easier transition.

The first few sessions were tough, I’m not gonna lie. One of the activities we had to do as an icebreaker was to wear beaded necklaces that represented different aspects of our genetic experiences. I wore a dark blue necklace (representing BRCA 1) and a purple necklace (representing previvor-no cancer). As a younger woman there, I wasn’t necessarily surprised by the women in their late 40s and up. Many of them wore pink necklaces (breast cancer survivors). What caught my breath was the number of young women (younger than age 30) who had teal necklaces on — ovarian cancer survivors. I’m afraid of my mastectomy; I am terrified of ovarian cancer.

There is far too much to write about here — information, observations, experiences. So let me just write that I’m so thankful to have attended a BRCA specific conference. Being genetically positive for cancer is very different than having a general conversation about cancer. It just is. So, the advice given on the news, on Oprah, in health magazines, etc., is really good advice for the average person and cancer prevention.

I am not the average person.

Being BRCA is not average.

At all.

There is advice about exercise, diet, nutrition. And, then there is advice about exercise/diet/nutrition for people who are genetically positive for cancer. There is advice about chemotherapy. And then there is advice about chemotherapy — and chemo prevention — for people who are genetically positive for cancer. There is advice for people who had surgeries as a result of breast cancer. And, then there is advice for people who had surgeries as a result of the combination of breast cancer and being genetically positive.

Information, for me, is not about prevention. It’s about reduction. And, reduction isn’t just found in any one easy solution. During a presentation with the leading doctors on BRCA, one woman asked, “Do you think we’ll ever get to a point where surgery isn’t the solution for the reduction of ovarian cancer for BRCA positive individuals?” Meaning, can these doctors foresee a time when we don’t have to remove ovaries, the uterus, etc., for women who have BRCA? The doctors emphatically answered, “No. This IS the solution.” Surgery is the solution for the most dramatic decrease in cancer for BRCA individuals.

While I was at this conference, I began to realize just how important Camp Sunshine and Rb week is for my daughter. It’s an opportunity to speak — and experience — something so specific. The research, sessions, and information are so incredibly genetics specific. People don’t just talk about mastectomies — they talk about mastectomies as a way to reduce the risk of ovarian and secondary cancers. People don’t just talk about taking better care of themselves — they talk about removal of organs, tissue, and surgical risk reduction.

Even with all the anxiety, it was so comforting to be surrounded by women (mostly women) who had undergone surgery or who were on their journey to surgery.

I felt like a mini-superstar at some times. When a few people saw my name, they said, “Oh, you’re the runner!” or “I’ve been following your blog!” or “Oh! You’re Liza!” That. Was. Awwwwwhhhhesome!!

But, having people know me and read this journey ALSO meant they knew I was anxious, nervous and promising to go to the Show and Tell (thanks Steph H. and Jaclyn J). Of course, I completely chickened out the first night. I didn’t go. I just wasn’t ready.

After 2 full days, though, of seeing drawings, photos, and glimpses of women (okay, one woman DID completely flash me in the exhibit hall), I was ready to go on the 2nd day. I still felt anxious walking to the room, but managed to survive.

The first person I saw as I came up the long narrow staircase was a woman who chose not to do reconstruction. What’s funny about this dynamic — of walking into a room with topless women displaying their surgical journeys — was my desire to ONLY keep eye contact. Haven’t we always been taught not to look at a woman’s chest??? Yet, that was the whole purpose! Even though I caught the scars and chest of the women, I had only looked at them for a split second — the rest of the time I was focused on her eyes.

I walked into the next room and saw Sue, the founder of FORCE, topless on her bed talking about her surgery. She caught my eye, I walked over, and she whispered, “How are you? Are you okay?”. I replied, “Um, sure, yeah. No, not really. I feel really overwhelmed.”

Steph H grabbed me and pulled me aside. Steph had been in my shoes last year — still considering surgery, had just found out she was BRCA, and looking for the first time. “I promised myself if I came back that I would show my breasts,” she said. “So, do you want to see them?”

“Uh, um. Okay,” I said timidly.

Steph pulled down the ties on her halter top and showed me her breasts. They were round, and just started to look “normal”. “It was hard to accept at first,” said Steph. “When they were natural, I embraced them for their imperfections. Now, I don’t feel the same about them.”

Steph’s journey is still so new, too. Thank you, dear friend, for understanding.

The (shocking) truth was that the women all looked completely “normal.” There was a a range of results — no reconstruction, breasts made from stomach fat and tissue, breasts made of silicone, of saline, nipples tattooed, no-nipples, etc. And, they all looked completely normal.

When it is my turn, I will look completely normal.

The FORCE conference was, well, awesome. No other way to describe it. I went to sessions about nutrition and diet, learned Genetics 101 in a way that has never been presented to me before (i.e. UNDERSTANDABLE!), learned about mastectomy options, holistic care, and emotional body image. There were so many amazing sessions that I didn’t get to attend, too. There were sessions about men and mastectomy, the experiences of BRCA in youth (age 30 and younger), and BRCA in under-served communities. Amazing.

I’m home now and even have some great swag from the conference (I won two beautiful pieces of art work! Yipee!!). Tomorrow, I have committed to calling my breast surgeon and scheduling a date, for sure. No more “sometime this year I’ll get this done.” Moving towards a date for surgery.

Special shout out to Steph H who has gathered a team to run in solidarity with Mb4M! That’s awesome! An Mb4M solidarity team? Yahoo!!
Stay tuned!

Peace, love, and FORCE,

Liza

PS If you’re training, we’ve got a 10K coming up next week!

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