My Lumpy Boob & Me

Over the past few years most of us have become accustomed to the growing presence of pink ribbons, our doctors' reminders to perform monthly self breast-exams, walks for the cure and the sale of pink-dyed baked good donating pennies of the profits to research. Breast cancer has gone from an under-diagnosed, frequently overlooked, and almost certain death sentence to arguably one of the most visible, talked about and screened for diseases in the country. 

With such high visibility and awareness, I admit I often feel guilty that I don't exactly perform those self-exams monthly, or even bi-monthly. It's more like on a "when I remember and then when I actually get to it" thing. I feel even more guilty that I am so lax considering my family history- my paternal grandmother was diagnosed and had a double mastectomy in her 50s. Worst of all though, is that, I still harbor at least a slight "it won't happen to me" attitude. Which is why I am more anxious about dealing with the pain of having a needle jabbed into my boob tomorrow morning than I am about getting the results back on the sample of the lump my doctor will be removing.

I should back up. A couple of months ago, I actually remembered to do that whole boob self-exam thing and I found a bumpy spot inside my right breast. I poked and pushed until it ached and I could be certain it really did feel different the rest of the area. It definitely did. I can best compare it to a hard, round marble just hanging out in the midst of all the other squishy stuff. This may sound alarming, but I've been through this once before and the marble I found when I was in college was also poked, prodded, biopsied and diagnosed as a completely benign fibroadenoma. It looks scary as hell on ultrasound but it's not cancer and for the most part doesn't increase my risk of developing it. And reassuringly, this lump feels very similar to the one I had when I was 23. 

Last week, I did my due diligence and went in for a mammogram and ultrasound to check out the suspicious spot as well as to do an overall check-up of both breasts. Having my boobs squished and pressed again wasn't exactly comfortable but I've survived worse. (HSG anyone?) The ultrasound was almost relaxing, especially since the jelly was heated instead of freezing cold. After lots of looking, the doctor agreed with my initial suspicions that this was most likely another fibroadenoma. She started talking about whether I wanted to biopsy it now to be safe or if I would rather monitor it for 6 months for changes and determine the necessity then. Until, I mentioned my history with infertility, IVF and FET. That's when the biopsy became my only option. 

As if the hell of infertility and the roller coaster of treatment isn't awful enough on its own, there is this whole non-baby related list of potential health issues that affect us and may continue to do so for the rest of our lives. Not that the doctor was particularly alarmed by my IVF history. She still thinks it's a fibroadenoma and so do I, but the fact remains that the effects of fertility drugs on breast cancer rates have still only been through a handful of studies. And as is usually the case, there is plenty of conflicting information. Some studies say there is no increased risk. Others say that there is, but only for younger women. (I was only 27 for both my IVF and FET cycles.) Add to that to wide diversity of treatment fertility patients receive, and I am not willing to take the summarized version of one breast cancer survey on CNN.com as proof that the countless vials of estrogen I have injected directly into my backside plays no role in my future health. So I am having the biopsy. 

Tomorrow I will walk into the office in my cute, blue, loose-fitting button up, have a large, hollow needle plunged into my breast and walk out flattened down by bulky "pressure wrap" wrapped around my chest for 48 hours. This coupled with the fact that I can't exercise or shower for those 2 days, nor can I wear deodorant or perfume to my appointment, worries me more than getting back my results next week. Or so I keep telling myself. Because no matter much I hold on to that teenage dream of "it could never happen to me" or how sure I am that this lump is just like the last one, there is always that nagging doubt in the back of mind. That thought the my grandmother wasn't exactly old when she had to have both breasts removed due to cancer. The knowledge that estrogen is the hormone most connected to increased risk and I have artificially increased my levels of it more than once (and might do it again). The images of pink ribbons and awareness posters. These things creep into my mind just when I have convinced myself that there is nothing to worry about. And the truth is, I really do believe there is nothing to worry about. This time. But I can't help but think, given my history, that it is only a matter of time before it's not "nothing". Which is why I will keep doing those occasionally remembered exams, and showing up for mammogram and biopsy appointments well before menopause dictates that I must. And I will be holding my breath just the tiniest bit when my phone rings next week, until I hear the word "benign".
 

A Message From The Southern California Walk Of Hope Chair

I am proud and honored to serve as the Event Chair for RESOLVE’s inaugural Walk of Hope in Southern California. It is incredible to have this opportunity to raise awareness about the disease of infertility, to support those suffering through it, and to share HOPE with everyone whose life infertility touches. It is my hope that this first annual Walk of Hope will see not only those goals achieved, but will also pave the way for a future in which infertility will no longer be a walk that anyone is forced to face alone.
 
Six years ago, when my husband and I decided to start a family, we never dreamed of the roller coaster of tests and treatments that awaited us. Not knowing where to turn and being too afraid to reach out for support at first, I began blogging in order to cope with our infertility battle. It was through my blog, “Ready to Be a Mom”, that I found RESOLVE and the wealth of support and resources they provide to all of the 7.3 million Americans suffering from this heartbreaking disease. The more I learned and became involved with RESOLVE, the more I realized just how deeply infertility impacts so many families. Each time I share my story, I learn about an aunt, brother, best friend, son or cousin who is enduring the struggle to become a parent. Even if it is not you that suffers from this disease, with 1 in 8 affected, someone you know probably does.
RESOLVE has helped me to uncover my passion to help all of those faced with infertility and to serve as an advocate for this community. I want to be sure that everyone that participates in the 2013 Walk of Hope feels cared for and supported, no matter where they may be in their infertility journey. I want to reach out and provide support to the newly diagnosed, the patients in treatment, the families pursuing adoption, parents who fought to get there, and individuals who resolve their infertility by living child-free. I want every person that faces infertility to know that they don’t have to face it alone.     

On September 29, I will walk alongside men and women from all over LA, San Diego, Orange County and beyond in the Walk of Hope to honor each one of our unique journeys. I will walk for my daughter, who would not be here without the amazing advances in reproductive technologies. I will walk for those who shared their struggles with me and supported me when I shared mine. I will walk for those still suffering in silence. I will walk to raise awareness that infertility is a disease that affects millions of people from all walks of life. So whether to honor your own struggles or to support a loved one, please join me at beautiful Aldrich Park on the University of California campus in Irvine on September 29, 2013 for a beautiful and symbolic one-mile walk to show support, raise awareness and most importantly, to spread hope.       
                                                 
To create your team visit www.resolve.org/socalwalkofhope, select “Start a Team” and following the directions. Then send an invitation to your family and friends so they can walk with you on your journey.

From Passion to Action: Advocacy Day 2013

The California advocates taking on Capitol Hill

The past month has been a non-stop travel fest for me. I drove the California coast, flew from the west coast to the east and back twice, went on a camping adventure and boarded a boat to a nearby island for a day of fun in the sun. Now that I am finally home and catching my breath, I finally digesting the amazing trip that started this crazy month- my trip to Washington DC for RESOLVE's Advocacy Day.

Since I first became aware of RESOLVE, I have heard about what an empowering experience Advocacy Day is and I always knew that one day, I wanted to be a part of it. Talking to the men and women in politics that make things happen, sharing my story, speaking out for the millions of Americans that struggle with infertility, making a difference toward passing legislation that will help so many of those sufferers, how could I not want to be a part of something so meaningful, so cathartic, so powerful? But living on the opposite side of the country, I have also long assumed it would be too overwhelming, time consuming, and expensive to make the trip anytime soon. This past year though, my inner advocate has come out in full force and become a huge part of the outer me. There isn't anyone in my life that doesn't know what an important cause infertility support is to me. I knew that there was no room for excuses or delays. This year was the year. This Advocacy Day was the day. 

And what a day it turned out to be. The rumors were true. Telling my story to the aids and staffers of my Senators and Representatives was cathartic. Walking miles across Capitol Hill to share information about important family building legislation with political offices was invigorating. Connecting with other advocates from across the country and from my own backyard was was inspiring. Everything about my experience was enlightening and empowering. I not only learned a great deal about the political process, I took an active part in it.

Each time I met with a staffer to tell them about The Family Act and The Women Veterans and Other Health Care Improvements Act, I was asked why this was so important to me, why I thought these measures mattered so much, how they would help someone like me, who despite my struggle with infertility has had the good fortune of becoming a parent. After all, an IVF tax credit will come too late to offset the costs of my previous treatments. The truth is, it's not my personal story or struggle that matters, it is giving EVERY aspiring parent the ability to build their family. I am one of the lucky ones. Yes, I spent my daughter's college fund bringing her into the world but I had the option to do that. So many who learn that IVF or adoption are their only family building options, don't have that ability and parenthood shouldn't be a luxury afforded only to those who have the means to finance expensive family building options. 

The struggle with infertility, as many of you know, can be so lonely, so isolating. Finding the community I did online was incredible and such a source of support and comfort for me. But being in a room or crowded DC hallway with hundreds of other women and men who knew what this fight was like, gave me a sense of community deeper than I had ever imagined. After years of chatting with amazing women on Twitter, I was able to give them the real life hugs I had always wished them virtually. I heard, in person, the emotion and rawness of what someone else had gone through to become a parent or how they had come to their decision to live child-free. I could squeeze the hand of those who came to Advocacy Day mid-cycle or in an adoption wait and let them know I was hoping & rooting for them. The power of that in-person contact was unbelievable and amazing and it is something I will always cherish. And there is nothing quite as awesome as enjoying a cocktail and dinner in a private dining room full of a dozen or so women chatting loudly about ovaries, homestudies, and wandy dates without ever having to worry if anyone is confused or uncomfortable- well except maybe the waiter.
 
But just because you could not be there on Advocacy Day, it doesn't mean that you can't still be a part of this community by being a voice for it. Write to your Congressional Leaders and ask them to support these measure that help those in the infertile community. Speak out. Share your story. Support others doing the same. Every little step makes a difference. Remember what you learned from School House Rock? 



Just like Bill's friend says, passing any new legislation requires lots and lots of courage and patience, but we have faced infertility! We have found more patience and courage within ourselves than we ever realized any one person was capable of possessing! If any group can show the fortitude and bravery required for this process, it is us! 

Here is the info you need to know about the legislation we were advocating for on Capitol Hill this May:

The Family Act: This bill makes infertility treatments more affordable to middle class families.

http://www.resolve.org/get-involved/family-act-of-2011.html

The Women Veterans and Other Healthcare Improvement Act: The bill gives access to the needed infertility treatments that wounded veterans need to conceive and start a family.

http://www.resolve.org/get-involved/women-veterans-and-other-health-care-improvements-act.html

Take time to learn more about the legislation and then make your voice heard! Thanks to my own struggle to become a parent, issues related to infertility naturally became a passion for me and thanks to amazing events like Advocacy Day, I am excited to be taking action too.

Meet the Advocacy Day 2013 Advocates!

If you are active in the infertility community, or even if you just dipping your toe in the water or reading blogs to learn more and support  a loved one, there is a good chance you have heard about RESOLVE's Advocacy Day taking place next Wednesday, May 8th, in Washington DC. If you haven't, next week members of the IF community will come together in the nation's capital to meet with their senators and representatives to discuss the issues and legislation important to those struggling with the disease of infertility. We will be there to represent the 7.3 million citizens living with infertility and let our elected officials know that our voices and our concerns are important and should be important to them too. 

I am so thrilled to be attending my first ever Advocacy Day this year to support those impacted by infertility. Support has meant absolutely everything to me in my journey to parenthood and I would not be in this position if not for the constant support of so many amazing women that I have met over the years through twitter and my blog. To say that I am excited about standing beside these inspiring ladies next week as we venture to Capitol Hill is an understatement. It is important to know that every successful cause, every movement is the result of ordinary people standing up and making their voices heard. So I am very excited about the blog hop Casey at Chances Our put together in order to get to know some of the advocates attending Advocacy Day. We are real people affected by infertility. Some of us have resolved our infertility, some have not. We are not politicians or lobbyists. We are average Americans from all walks of life and all corners of the country. We even have an incredibly supportive and caring Canadian standing beside us and contributing what I am sure will be fantastic professional photos of this momentous day. (Kelley- you rock!)

So please take a moment to learn more about Advocacy Day by visiting RESOLVE. Read my Q&A to learn more about me and why I am attending. Then stop by the blogs of some of the other amazing women attending to read about their hopes for Advocacy Day. If you can't be there with us, know that you are there in spirit and there are still ways you can show your support! Lend RESOLVE your Facebook or Twitter status on May 8th. Log into Thunderclap and help us reach thousands of people with 1 message about infertility awareness.

1. Where are you in your infertility journey right now? In one sentence!
After 3 years of trying to conceive with infertility, countless timed cycles, 3 rounds of clomid, one IVF, a miscarriage and a FET, I am the incredibly grateful mother of an amazing two-year old girl.

2. What inspired you to go to RESOLVE Advocacy Day 2013?
Since becoming involved with the infertility community, I have grown more and more passionate about advocating for all those facing this terrible struggle and finally decided this was the year I would push through the obstacles and make it a priority to talk to Congress about the issues that mean so much to me. Twitter slumber party 2013 makes it that much sweeter!

3. What do you want Congress to understand about infertility?
I want Congress to know that infertility affects men and women from every corner of this country. It impacts not only the one in eight who suffer directly but it has a ripple effect and touches the lives of millions of Americans, regardless of political party, race, class, or gender. It is a disease worthy of our care and attention. 

4. What are you most looking forward to about Advocacy Day?
I am excited to meet with my Representative, Loretta Sanchez, who co-sponsored the Family Act in 2011 to thank her for her support and ask that she support the bill again. I am also beyond thrilled to spend time with some of the most amazing women and advocates I have ever had to honor to know and finally meet many of them in person for the first time! 

5. What is one thing other advocates will be surprised to learn about you when they meet you?
This is the tough one...Um? I talk A LOT and  can get very passionate when I do. I also have chronic foot in the mouth disorder so I ask your forgiveness in advance if I say something that comes out all wrong or makes zero sense. 

Meet some of the other advocates who are going and show your support!

Fran Meadows

Jen Rutner

Miss Ohkay

Whitney Anderson

Lauren

Casey

Carrie

Katie

Kelley

NIAW: Join The Movement

This week, April 21-27 is National Infertility Awareness Week. Since I first began participating in NIAW three years ago, it has become a time of inspiration to me. I never feel as connected to the infertility community as I do during this week of advocacy, education and awareness. Each year that I have participated, has brought the opportunity for new reflection and growth. 

It was during this week in 2010 that I first opened up about my infertility. My husband and I "came out of the closet" so to speak, as one of the 1 in 8 couples in the U.S. experiencing infertility and as one of the 1 in 6 that suffer a pregnancy loss. Taking that plunge was terrifying. I had carried so much guilt and shame about my infertility diagnoses for so long. But once we went public, we were astonished by the love and support we received. What surprised us even more were the friends and family that came forward to let us know that they faced it too and that we were not alone. The more I reached out, the less isolated and ashamed I felt. My first NIAW was a turning point and the first time I felt as if I had taken charge of infertility story instead of letting it control me. I broke the silence and in the process helped others facing similar struggles, engendered compassion in those that didn't, and opened up a whole new world of support and empowerment for myself that would help me through some of my toughest moments. 

This year I have been as enthusiastic about NIAW as ever. Infertility advocacy has been transforming for me from something I didn't know how to approach to a passion that I can't seem to do enough of. I am thrilled to be attending RESOLVE's Advocacy Day next month for the first time. I can't wait to speak to my senators and representatives about how vital The Family Act is to me and the other 7.3 million people facing infertility in the U.S. In an attempt to reach out even more, I have also begun blogging for Fertility Authority and this summer I have plans to begin another exciting position with them as well. And perhaps the scariest, most exciting advocacy experience of all- I have agreed to CHAIR the first ever Walk of Hope in Southern California this fall. (sidenote-if you're in SoCal and want to get involved- please message me!) But as exhilarating as all of this involvement in the movement and the community is, it is still the quietest of exchanges, the simplest acts of providing support to someone that needs it or speaking up for those who are struggling that matter to me most. 

One of the things I cherish most about NIAW is the opportunity to learn more but the movement, the community and myself. This year I have discovered that while NIAW provides hope and support for many, that is not true for all. There are wonderful women and men suffering from infertility that feel pain and loss during NIAW rather than support. Let's face it, the infertility community and our supporters in the fertile world are obsessed with "success stories" and by success we mean people who are infertile, but in some way became parents. We don't know how to celebrate the success of those who resolve their infertility by living a child-free life. I readily admit, that while supporting those in the community that have reached a child-free resolution matters to me very much, I am not always sure of the best way to do it. These stories don't touch my heart any less than the tales of IVF or adoption, but I have heard from so many that without the constant chatter of cycles and homestudies, those in the child-free camp often feel left out of the conversation and even the infertility community as a whole. This breaks my heart because we not only need to support EVERYONE that faces infertility and celebrate every victory, every resolution, we need these stories, these voices to make our community and our movement whole and complete. 

Equally heartbreaking, is that there are those who don't see the value in raising awareness about the issue because, while NIAW and speaking out may provide you with personal comfort and release from shame, it does nothing to actually cure infertility itself or that "forcing" awareness down the throats of those not facing infertility is fruitless and self-indulgent. To that I say, you are missing the point. No, posting a link to a blog post about how to best support friends and family struggling with infertility won't resolve their infertility. Sharing information about deciding to see a specialist and how to find one won't guarantee that treatments will be successful. Educating co-workers that 7.3 million people face infertility won't decrease that number. Awareness on it's own won't make infertility go away but it WILL make a difference. 

One thing everyone struggling with infertility seems to agree on is that it really is a STRUGGLE. Not only because our hearts break month after month, year after year with our inability to become parents, but because the navigating the world of fertility doctors, adoption lawyers, uninformed friends, unaware politicians and unconcerned insurance providers is one of the most challenging things we have ever had to do. Only through awareness can we begin to change all of that. Educating the public about the pervasiveness and realities of infertility will increase understanding of infertility as a disease deserving of compassion. Advocating by writing to your congressional representatives or by attending Advocacy Day will increase political presence and help pass important legislation like The Family Act, which would reduce the financial burden of fertility treatments for millions of Americans. Showing support and compassion for friends and family facing this disease, whether or not you face it yourself, makes a difference in your loved ones lives in ways big and small. Writing, talking and sharing the realities of IVF, domestic and international adoption or living child-free will ensure that every voice, every experience with infertility is represented, heard and supported. Taking the time to truly listen and support everyone devastated by this disease, no matter how much their circumstances and choices may differ from our own, will make this movement even richer and more complete.

With all of the obstacles facing those with infertility, it is easy to forget how far this movement has already come. The women and men of our parent's and grandparent's generation did not have RESOLVE support groups or online communities available for them to seek a compassionate, understanding ear. Adoptions were often done under a shroud of secrecy with little to no support for any involved. Adults without children were feared or ridiculed as "old-maids". Education about what really does and does not work when trying to have a baby was limited to what was passed on between friends and family members, rarely with sufficient access to additional information or medical assistance. Infertility simply wasn't often talked about. It often still isn't. I know it seems so small, so insignificant to just talk about infertility because how can that possibly make a difference? But speaking out is the first step of any movement. No, it is not a cure for infertility but if we keep it up, it WILL cure many of the challenges that currently accompany it. So make your voice heard and support others who are doing the same. This community is powerful and strong, we CAN make a difference.

"Never believe that a few caring people can't change the world. For, indeed, that's all who ever have." ~ Margaret Mead

To learn more about infertility and National Infertility Awareness Week please visit:

• http://www.resolve.org/infertility101  (Basic understanding of the disease of infertility.)

• http://www.resolve.org/national-infertility-awareness-week/about.html (About NIAW)

Light in the Face of Darkness

Like most people in the US tonight, I am struck with shock and sadness over the events in Boston earlier today. It is horrifying to witness innocent people become victims of senseless violence like that of the bombs that exploded near the finish of the Boston marathon, killing some and severely injuring many more. Throughout the day, I have seen and heard many statements of despair at living in, and trying to bring children into, a world that holds such cruelty. Events like these are the types that often cause people to lose their faith in humanity, but I have seen something else too- displays of hope, caring and compassion. While there are certainly countless reports of tragedy, and I fear there will be more in the days to come, there is also great evidence of kindness and behavior that exemplifies the very best of humanity. 

I am sure many of you have heard the reports of marathon runners, who, upon learning of the blasts, kept right on running until they reached the nearest hospitals to donate blood. Or maybe you have heard about the local Boston residents who opened their hearts and their homes to provide those displaced with a bite to eat and a place to rest. And of course, you know that the very instant the first explosion happened, bystanders, firefighters and police officers nearby rushed to the aid of the injured without a second's hesitation. The most beautiful quote I have seen circulating today is this one from the late Fred Rogers: "When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping.’” Mr. Rogers and his mother were certainly right about the amazing and inspiring side of the helpers in the face of tragedy. As I thought it over tonight, I realized it was not just the tragedy of horrible events such as those in Boston, that these beautiful words apply to. 

While I in no way aim to compare the deplorable and heinous violence committed in Boston, or any other act of terror, I do believe that infertility is undeniably tragic for those who suffer it. And just as brave men and women have showcased the best side of humanity in Boston and across the globe through their eagerness to help, it was my battle with infertility and experience with miscarriage that showed me that most people truly are compassionate and caring at their core. Yes, there will be those that will use this tragic news to further their own selfish agendas or who will carelessly diminish the pain and loss experienced, just as there are those who will insist that infertility sufferers were never meant to have children along with any other number of hurtful, negative things. But there are far more people rushing to donate to the Red Cross, offering a couch to crash on or a shoulder to lean on. Most importantly, there are more "I love you's" being shared than messages of hate. When people are at their lowest, their most vulnerable, the realization of what and who matters becomes undeniable. I know that so many people are holding their loved ones tightly tonight and making sure that they know just how much they are loved.

And that is what I took away from experience with the outside world when I finally shared my struggle with infertility. For every anonymous "you are so selfish for doing IVF", there was an entire supportive chorus of "we are here for you". For every thoughtless question or careless comment there was a twitter pal, or a blog reader virtually squeezing my hand to remind me that I was not alone. For every heartbreak, there was a friend or a family member offering a hug to let me know that no matter how broken I was, I was always loved. In the darkest moments of my life, it was the helpers that showed me the light, and it is the caring people, the helpers, in Boston that remind us all of the light that will continue to thrive in our world no matter what evil may try to extinguish it. That is the world I am so grateful to be raising my daughter to be a part of.

Two Years of Love & Laughter

To my precious Snow Pea on her 2nd Birthday: 

I can't believe that we just celebrated your 2nd birthday. It seems like such a short time ago that you came into my life and made it brighter with your laugh. You have grown so much and developed so many wonderful new abilities in these two years, but it is your ability to laugh easily, effortlessly and with sheer joy that is the most heart-warming, infectious and beautiful. Not a single day has passed this year in which I have not had the honor and privilege of hearing the music of your laughter. Even on those days you behave like a "terrible" toddler- tantruming, whining, pouting or crying uncontrollably for no other reason than you want to cry- you still find reasons to laugh, loudly and with utter abandon. 

In your second year of life you have become less of a baby and more of a child, and what a truly happy and loving child you are. You show concern when anyone around you expresses sadness or pain. You are always quick to ask if I am ok when I cough and to bless me when I sneeze. And once you are sure there is nothing serious to worry about, you are right back to laughing and doing your best to spread that laughter with a silly dance, a tickle fight or just a plain old squeal of delight. You do that squeal a lot actually, it's kind of your trademark, you're very well known for it. You don't even need a big reason- your friend is in the stroller next to yours, you successfully put your plate into the dishwasher, you are in the middle of singing a song you really like, Daddy is lying in the middle of the living room floor- any little happy moment is cause for BIG celebration. 

As you turn two, it is clear that you have many emerging talents and I know you will continue to acquire new skills, interests and abilities as you grow. I will be there to encourage that growth and help you develop your talents but it is your effortless ability to find daily joy, to laugh loudly and often, that I hope with all of my heart never changes as you age. I hope that each day continues to bring you reasons to laugh, to smile and to squeal with delight and if the day does not give them to you, I hope you continue to find them yourself as you do right now. 

There was a time that I feared I may have lost my ability to be joyful the way you are now. I was hurting and broken and I felt that I may have lost a part of me that I might never get back. In many ways, I think I was right. I have lost, I have changed. But thanks to you, your presence in my life, my life as your mommy, I have found parts of me that I thought were gone and even created some new ones too. The very thought of you is enough to bring a smile to my face and your daddy and I have yet to have a night pass after you're asleep when we don't recount the amazing, charming and hilarious things you said and did that day. You are our joy baby girl, just as the entire world is yours. Thank you for two incredible years of loving and laughing. I look forward to countless more giggles, squeals and smiles with you in the years to come. Happy Birthday. 

Love, Mommy