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Archive for the ‘breast cancer gene’ Category

I am re-purposing today. I wrote the passage below 4 months ago: (9/25/13), just before leaving New Jersey and my job. I write to remember where I am and make sense of it all. It helps me recognize where I am in the present moment, reminding me of where I want to go. Writing is my GPS for intentional living.

Last night I remembered why I like being a speech-language pathologist watching some local therapists run a Hanen program. This was my love over the past 9 years, but I let my programs go after motherhood. I couldn’t find the time with babies of my own, balancing full-time work, adjusting to a less-full time schedule, moving, and figuring out how many hats I could wear (writer, mama, coach, speech-language pathologist) without looking like this:

caps for sale

Could I still wear them all? Did I need to give any up to excel at the others? Was wearing all of my hats causing me to move at a slower pace with this balancing act?

I spoke with my virtual writing group this morning. We spoke of white space and empty vessels. I  require breathing room in order to clear my plate before starting a new dish.

Where do I find joy? How am I recreating myself post motherhood (with two children now in tow?). 

Here is a snippet of my journey 4-months ago in the midst of my biggest transition yet…

I am leaving in three weeks. 

My 26-year-old self returned to New Jersey as a new speech-language-pathologist coming into the profession idealistically bright-eyed, determined to change the world of communication disorders. I am returning to California a 36-year-old mother of two, only wanting to leave the world a more compassionate place.

I am in transition again. I am transitioning from speech therapy to coaching. I am honoring the journey of the last decade.

I am grateful for the Hanen program, making me a better therapist. I stepped into coaching and teaching. I was so scared and so called.

Then there is Mom’s chemo. I am leaving, and my mom is a few weeks into chemo. When I returned a decade before, she did not have ovarian cancer. I had not had a mastectomy, or known I had the BRCA gene. Ignorance was bliss. We are the same, and changed in an instant. Life is fleeting. There are no guarantees. Precious time is slipping away.

I feel called to work with groups. I want others to know we are not alone. We have a story to tell, and we have companions on this journey. We are held. We hold. We are all interconnected.

I wanted to hold my families who wondered if their children would ever talk. My energy held them for so long: after the long evaluations when I’d see suspect Autism, after realizing a child might be deaf, I held their fears close. I wanted to hold all of these families until it became too much, and I felt myself going numb. I felt myself shutting down. There was no room to hold anything anymore. I was ready to throw my hands up in the air and let it all go.

I adored my Hanen families. I loved them for showing up. They had babysitters. They were committed. They were my reason for staying.

They inspired me to teach other professionals, they believed this work had value. I felt aligned with my vision. I felt the call to teach. I stepped into the role even when I felt too small and overwhelmed by life. I taught big workshops then went to the doctor the next day for another biopsy for a suspicious malignancy. My love of this work kept me from losing my mind on the journey. I gave a workshop to a group of 100 teachers when I was 37 weeks pregnant with Evan, scared I might give birth, wondering if the teachers were taking bets on when I would pop. I left for my maternity leave feeling complete.

The system has changed. Billing, logistics, more paperwork, liability, proposed budget cuts. I want to escape it all. I feel constricted yearning for expansion.

Since becoming a mom, I don’t want to be a super-SLP. I just want to be a place of compassion. “You are doing all right. This his hard. I hear you sister. I am not the expert on potty training – my son has taken over a year, and you have no idea how much I bribed him. It is hair-pulling work.”

I bring forth my gifts by writing to understand them. I want to show others I struggle. I am far from perfect, or even good enough on my best days. But I am enough. I don’t need to over-do to prove it to myself and win the busy-game. I am taking a time out. I don’t want to be too busy anymore. I’m not too busy.

I am leaving because it is time.

My family calls me. A next chapter calls me. I am freaking out (scared) and taking a huge leap of faith (called).

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The past few years, I have chosen “words of the year.”

My practice began in 2011, shortly after giving birth when I chose SIMPLIFY.

Then in 2012, with a strong urge to begin living with less – it was UNENCUMBERED (although it could have also been CHANGE).

Last year with the help of Susannah Conway’s Unraveling the Year Ahead, I came up with BIRTH/CREATE (maybe obvious considering I was gestating).

And this year, I have two. I was not one of the bloggers who shared their word/(s) on New Year’s Day, as I was still contemplating mine. I could sense two distinct energies coming up with neither one overpowering the other, rather wanting to remain conjoined.

At my coaching mastermind retreat in Sedona last month, I met another coach doing groundbreaking work. Her practice supports women recover divine powers by connecting with their pelvic bowls (so much more coming about this, as it’s become a new fascination). She taught the functions of our ovaries are the point of creative power: the right and left ovaries each holding different energies.

I told her my story: having an ovarian cyst the size of a grapefruit misdiagnosed for months when I was 9-years old. Ovarian cysts like mine are rare pre-puberty. My cyst stumped the teachers, school nurse, and doctors asking about problems at home or in school. I was having problems in both, as I frequently rocked in the fetal position to alleviate the pain. I was hospitalized for a week before it was discovered, and immediately removed with part of my ovary. My scar resembles a C-section. But more than my physical scar, the conversation between my mom and surgeon was stitched into my memory: “Will she be able to have children?”

“Only time will tell,” he answered.

I had just learned about ovaries that summer. My love of Judy Blume books prompted questions to my mom. My “talk” was a drawing of 2 ovaries and the egg traveling through the fallopian tubes. I’m wishing we kept that sacred diagram for posterity with ovaries, birth, and cancer present in our family tree. I will deal with them when I’m ready, I’ve promised my parents, doctors, and anyone else who broaches the subject as my own interest in their dance and my pelvic bowl increases.

And so this year I have 2 words.

My right ovary shouts:

OWN IT!

OWN IT!

A friend shared this post with me, which captures my Madonna-inspired intention. Bring on the ROAR! The call to step up, play a bigger game, and all of the other phrases which I simultaneously resist. But “OWN IT” to me means more. It is about “enoughness” and taking responsibility. It is the call to move into being generative and teaching, leaving the hungry seeking student behind. It is calling me out of the shadow where it is more comfortable to observe asking me to share my gifts for the greater good.

CULTIVATE

CULTIVATE

CULTIVATE is my other word. This one feels rooted like a tree. It is the fertile soil of the constant gardener who has been toiling each day although you might not yet see the fruits of her labor. It is the one who continues to show up, branching out in a new community, connecting with people who inspire her, and taking little gentle baby steps each day. CULTIVATE is a word that speaks to my motherhood and the delicateness of raising children. CULTIVATE is the calm and quiet word which says, “Yes, I will show up again tomorrow and keep going.”

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Is anyone else beating themselves up feeling like they have fallen off of a New Year’s resolution wagon (yet again) this year??? For 2014, I have some pretty big plans. In fact, some of them feel so big I have become extremely conscious of my time. For those of you who know me, I have a (past?) bad habit of over-committing to activities which are appealing in the moment (I see you nodding and chuckling!)

I have one of those: I am so sick of seeing this resolution that if it is on my list again next year I will totally chop off my hairYes, the kind of feeling I need to ignite my inner coach who gives me a kick in the pants, shouting: “Just stop whining about it already and DO it!!!!”

I’ve been quiet here on the blog. I’ve been writing elsewhere, and it feels like a secret love affair away from this more public place which is now visited by more people than just my mother.

So here it is: the resolution which will not be there again in 2015. I will write and FINISH my book about choosing my own journey with the BRCA gene. Whoa! I feel like I just got a load off my chest (pun intended) sharing that here.

I had an eye-opening experience when I spoke with my visionary Mastermind tribe earlier this month. I shared how I enjoy the clients I’m coaching. I shared my plans for group programs and retreats. I shared the speech opportunities which are appealing as my own boss. I shared my desire to facilitate a class at a local birth center. I shared how motherhood has its own pace currently having 2 days a week to make all this happen. And then I shared that always on the back burner, remains the book, and it doesn’t want to go away. When asked to choose my biggest dream for this year, it was seeing my (finished) book in my hands by next December.

It’s a messy, raw, and personal story. I don’t like who I am when the book begins. It sometimes gets to be too much, and I need to step away remembering there is something healing happening as I own all of my journey. It’s the story of the road I had to get through to come to this exact moment as I wrestle with my writing demons and decide to put my hands to the keyboard.

I am sick of my whining, and waiting until next year. The only way for me to relieve this discomfort is to write. (It’s obviously not going away without it). The story has been written and re-written for the past 4 years, but took a new format earlier this month. Some days it’s coming out like a spigot. Others, like I’m sponging up wet spots on the counter. But the story has a power of its own, coming so quickly my fast typing hands cramp after hours sitting at the neighborhood coffee shop. I move from chronos to kairos time, where it stands still and I find my subconscious totally entangled making connections I never saw before. I can’t consume enough caffeine to write long enough. Yes, it’s become a torrid affair ripping me away from my family where all I crave is time alone and time to write, but once I get it – I’m a better mom at the end of the day.

In committing to my love affair with this book, I wanted to be conscious about my time on this blog. And being away from this space for the past month has felt disconnected, like I was losing touch with a friend who I really love and adore. I WANT to step back into this relationship. And just like a relationship that’s been neglected, it seems a little bit awkward. I am tripping over my words and editing and re-writing more than I normally do. There are moments during the day when I’ve thought of posting, but have not been sure of what to say since too much time has passed. Yes, I’m seeing my blog as an abandoned old friend who needs a little love too.

The only way I know to unblock creatively myself is to show up with baby steps.

I read this post of Flora Bowley’s which is highlighted in Somerset Studio’s current issue about Falling in Love with Your Blog in 30 Days.

I totally agree. The only way I can re-commit to my blog is by treating it like a love affair (just call me a writing mistress). There will probably not be the same 1000 words going into my book – but maybe a picture, or a memory, or a conversation – just something to get the conversation started again.

So even though I am scared of this commitment, I have fallen flat with far too many 30 day challenges to count – I’m committing to post something every day until February 19th. Warning: it might be raw, and not well-edited, and most likely a little rambling – but it’ll be here.

I’m not ready to give up my blog because of my book. Call my poly-amorous with my writing – I just want to cultivate my current journey too while continuing to step back into the past, to remain conscious of the unfolding present moments too.

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There has been so much going on in the last 6 weeks.  I’ve become a mama (again)

c birth 13and now I’m navigating a new journey with two young children.

e & c

There are moments which humble me.  I wonder how other moms make it through the day, and there are moments I am so grateful to be exactly where I am in the chaos of it all.

This morning I watched the (super) early morning news while feeding my daughter at 4 am.  The headline story was Angelina Jolie sharing her decision to have a prophylactic bilateral mastectomy after learning she carried the BRCA-1 (breast cancer) gene.  Despite being half-asleep, this jolted me awake quicker than a triple espresso.  For me, this is BIG news.  She might be the most well-known woman to date who shares my story.  This month the BRCA gene has been brought to the forefront again with the Supreme Court hearing the lawsuit against Myriad over whether a company can patent the breast cancer gene and now Angelina Jolie’s op-ed piece in the New York Times.

This blog started in the weeks following my own prophylactic bilateral mastectomy on July 16, 2009.  But my story with breast cancer started long before.  I was 16 when my mother had breast cancer.  In my early 20s, the advice I received from a doctor was to have babies early and ovaries out when I asked about my cancer risk.  By 26, I was having annual mammographies and sonograms for cystic breasts.  At 29, I watched my mom battle Stage 3 ovarian cancer in the months before I was married.  At 31, I learned of my own genetic status  (BRCA-2 positive) a decade shy of my mother’s breast cancer diagnosis 15 years before.  

I initially chose surveillance after learning I was BRCA-2 positive.  However in the following months, several suspicious malignancies were found by ultrasound and MRI.  I held my breath until I had the results from every subsequent biopsy – (all 3 were benign).  By Christmas 2008, I told my husband I was ready to cut them off.

This was a process.  I started the new year meeting with an oncologist, breast surgeon, and psychologist.  Couples counseling was a prerequisite to surgery.  Stress and uncertainty marked this period, and my relationship with my husband grew in unexpected ways.  He urged me to go to the FORCE (Facing Our Risk Cancer Empowered) conference where I met women who had undergone surgeries.  I felt divinely guided at the conference with every conversation and chance encounter to the excellent doctors who performed my procedure (one-step nipple sparing) all the way through my navigation with insurance.

I became vulnerable in unfamiliar ways.  I was used to supporting others, and I now needed to rest and be supported.  I slowed down.  It was a period of learning to wait, where I could feel myself coming undone like a wall being prepped before painted.  My undoing allowed for true healing of my mind, body, and soul.

With each person who comes out of the BRCA closet and shares a story, we change the future faces of breast cancer.   Since I learned of my BRCA-2 status, I have met and spoken with hundreds of women who are also previvors (as opposed to survivors).  Thank you Angelina Jolie for courageously choosing to share your previvor story with the world.  Our stories matter.  They bring awareness and light to those places of uncertainty.

My BRCA story does not end here.  It’s a non-linear story that keeps on going, with more doctor’s appointments and a surgery in the upcoming months.  My story matters.  It may be another person’s life force.  That’s reason enough to keep them coming…

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I went for pre-admission testing at 7 am this morning for surgery next week.  I love hospital waiting rooms.  They really do it right.  Great magazines, cappuccino machines, and good hospitality.  I could have hung here all morning if they had not been so punctual: )

Being back in hospitals, reminds me of being on the same route but different journey with my breast cancer gene.  Am I nuts to be treating this procedure like a cake walk compared to my mastectomy?

This morning, I was advised of the effects of anesthesia.  I know the effects on me.  I repeat myself over and over, normally with embarrassing information that would be better left inside my head.  When I had my wisdom teeth removed at 21, I repeatedly asked the doctor when I could start drinking (my mother was so mortified, and still impersonates me whenever anyone mentions their wisdom teeth).  Following my mastectomy, I asked my surgeons if they removed my “party trick.”  (Yikes!)  Who wants to place bets on what scary things will come out of my mouth this time?

But there is some real fear besides what will come out of my mouth.  I’m wondering if I’m gambling with my fertility.  My surgeon understands, but it’s the risk he wants to take knowing what he knows.

He is the same surgeon who operated on my mom’s peritoneal cancer 7 years ago, and was instrumental in saving her life.  His presence brings me back to 2005 when the future felt bleak.  He was grave after her surgery, explaining her cancer was Stage III with a prognosis of a 50/50 survival rate in 5 years.  My mom said she would be happy for 5 more years, long enough to meet grandchildren.

I really hope she gets to meet some more too, because the two above are pretty freaking delicious~

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Last Saturday we had a garage sale.   The week before was tense, tiring, and emotional as we navigated through our things which were near and dear but ready for a new home.  I held onto my vision of simplicity, letting go of anything keeping me moored versus moving me forward.

Early morning was iffy with a downpour the night before, but it turned into picture-perfect garage sale weather.

We were off to a bang with some earlybirds: one of our higher priced pieces sold for $35 along with a Jack Daniels statue from the pub for $2.  The buyer of the JD statue was sad it wasn’t made of marble (really???) but decided a styrofoam Jack would be perfect in his home.

Then came the hagglers and my inner gang-busta came out.  Let me preface this: I love humanity and believe in the goodness of humankind.  I was selling children’s books at $1 each.  (I would have taken 50 cents, but learned to price higher so the hagglers could haggle).  One woman told me she shipped books to Africa, so I cut her a deal: 5 books for $1.  We went through the bin of 65 books for $13.  She started yelling at me, “Ten dollars!  Ten dollars!  Ten dollars!”

“Thirteen,” I was firm, turning away from her and returning to the friendly folks who found our stuff to be steals.  (True comment from a garage sale shopper: “You are having the best garage sale in town.”  Did I mention it was town-wide garage sale day?)

The woman’s frantic yelling about “Ten Dollars!” escalated, and my husband (garage sale good-cop) let her have ’em unaware of my 80% knock down already.  BTW: I am sure my children’s books are in a swap meet this weekend rather than en route to Africa, although if I am wrong, by the grace of God, and those $3 made a difference – so help me.

Next neat moment was seeing my lunch room aide Laura from elementary school.  She was young then (nearly 25 years ago), and does not look a day over forty.  She was the fifth grade aide when I had my notorious hair cut, a spiked-feathered-bang “fix” by the barber after cutting my own bangs.   What I remember about Laura was her kindness (pity?) after this incident.  She genuinely cared about my classmates giving each of us an ornament for Christmas.  I shared my recollections dropping other lunch-aide names to place my era, since I’m no longer the fifth grader with spiked bangs, and she has worked in different schools for 25 years.  (This all happened while being yelled at by the haggler above).  And by the way, do you know what Laura bought?  (I say “bought” for $2, because she refused to let me give them to her).  Supplies from my arts and crafts bins for the kids she sees now.

Next up was a garage sale angel.  I was excited to host a big clothing swap the night before, but became overwhelmed and canceled it (twice).  I noticed this woman who had incredible taste picking through my clothes.  She is opening her own urban style clothing resale store next month, and loved my style.  With armloads of things, we went on the porch and came to a fair price on each item.  (So different from the book haggler).  This was such a win-win.  She walked away with TONS of “SO Ellen clothes”, and I had a few hundred dollars in hand.  I loved my style taking on a life somewhere else, and can’t wait to shop there when it opens.  As I checked out her website, I saw this – which totally sums up my attitude.

Bye clothes!!!

Some other things I let go of:

Tina Turner wig: (I truly feel my inner-Tina daily without needing the wig anymore as a reminder.  Also, this wig has given my son nightmares as he shrieks every time I take it out of the closet.)

Dominatrix belt and eye covers: sold to this lovely woman who teaches Zumba to seniors, and thought it would be fun to do her routine in costume!  I LOVE!!!

Okay, so here is the biggest beautiful moment of the garage sale.  I put out this book, about breast reconstruction – but felt guilty about doing so.  I really wanted to give this book to a woman going through a similar journey.  A woman browsed my books.  I didn’t notice her holding the Breast Reconstruction book until she said, “Excuse me.  Can I ask you – did you have cancer?”

I now noticed her and her short hair and sparkling eyes.

“I have the BRCA-2 gene,” I shared.

“I have the BRCA-2 gene too,” she said.  Time momentarily stood still.  We spoke about our own paths, mastectomies, doctors, and family histories.  She shared what it was like finding out she had BRCA after breast cancer, while I shared what it was like finding out before having children.  She didn’t know many others with BRCA.  I knew a whole slew of women from FORCE, and others whose life stories sit waiting to be shared on my computer.

The past two years, I’ve wanted to let go of writing about this, wanting to write about anything other than breasts and cancer.  But each time I encounter someone like this woman, I wonder if I’m withholding stories that can change lives.

Now I’m reconsidering.  I’m holding on jut a little bit longer, not letting go, and taking this lesson from the day.

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I am shaking while I write this post. As in, had to run downstairs ASAP and get this on the page.

In tiny gaps of free time, I have been clearing out a home for an upcoming move. I was upstairs tackling my creative space/office

which is currently in chaos when I came upon my breast cancer book I had shelved. My book was in its early stages with accordion files of interviews and personal reflections before my son’s birth. I didn’t want to talk/write/think about breasts or cancer in the weeks after he was born. I just wanted to move on.  I wanted to enjoy my beautiful baby boy who I waited so long to meet.

Three years to the day, at this exact time (!) I attended my first Facing Our Risk Cancer Empowered conference and participated in a session about writing my Previvor/Survivor story with Kathy Steligo.  Holy Crap! Can the Universe be so crazy for me to come across a writing exercise about what my life would look like in 3 years exactly 3 years later to the minute!!!

Read on:

5/15/09

If I had an extra $10,000 I would go to the Omega Institute  this summer and take workshops. I would give myself time to travel and go wherever felt inituitively like the next step. I would live in the moment and feel at peace financially. I would take some risks that feel frivolous like going on a trapeze or shooting a gun (have no idea where that came from) – and not feel guilty about taking money set aside from my budget.

What’s next? Emotionally wrought – blocked — huh? No wonder my insides have been feeling so stuck, and I’ve been so hard on myself for not being able to commit to any goals. I feel lost right now. Unsteady. Like I’m not sure what’s happening with the blank page in front of me. Not necessarily scared – just stuck. Immobile. Indecisive – and hating myself for feeling this way rather than being gentle and thinking, “This is perfect!” Angry that I’m procrastinating and this (dealing with BRCA mutation) is holding up my life longer than expected. Wanting to turn this into an empowering experience before giving myself a chance to grieve. Not necessarily trusting the process just yet.

Three years from now (AS IN TODAY 5/15/12 – OMG! OMG! OMG!) the confusion will dissipate. There will be more clarity. I will have a new chapter and be in a different place. I might have a larger family with my own children who I’ll wonder if this will call them someday to wake them up to their own life. I will be able to support others better at that point after having entered into the process on my own. Three years from now, we might have an entire family here supporting us through these twists and turns that nobody could have predicted but were destined to be in my life for a greater purpose. I will feel peaceful and know that whatever challenges lie in my path will be met with surrendered grace. I will not fight inside with how things are supposed to be – resisting change, but allowing the flow of uncertainty to move me like a ballerina effortlessly dancing. I will write about this – and speak – and empower. And change other’s lives so that they can see the truth within themselves which reconnects them to a sense of community and new relationships. A responsible and authentic woman will burst through the fog of these dense breasts – cloudy no more.

lunch with our Fairy Godmother. What do you think I wished for?????

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