Aren’t we all “Survivors”?

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Since being diagnosed, I’ve never felt comfortable calling myself a “survivor”. In fact, I hated it. I remember when only a few weeks after my surgery, a friend introduced me to someone and said, “this is my friend Jill, she is a survivor”. Although she meant it in a loving and admiring way, I instantly cringed and thought to myself, “Really, I’m a survivor? What did I survive”? I couldn’t help but feel that being called a “survivor” implied that I wasn’t supposed to live and frankly that wasn’t even close to what had happened the 7 months prior. YES, I had surgery that altered my body physically so that I could live and YES I did 16 weeks of chemotherapy so that I could go to bed at night knowing that I did EVERYTHING I could to live– BUT never did I once think I was going to die nor did I ever feel like I had “cancer”. So really what did I survive?? My cancer was early stage, not in my lymph nodes and I didn’t even lose my hair during chemo (which sometimes sends the message to the world that you are a “cancer patient” without uttering a word). It seems to me that people throw the term “survivor” around whenever there is a strong possibility of death. Like the holocaust “survivors” or someone who “survived” a physically abusive relationship or perhaps someone who “survived” a massive heart attack and was on the brink of death. Yet somehow, I am a “survivor” now?? I don’t even know what a “survivor” looks like? People tell me how I am such a strong and amazing “survivor” but frankly, what otherwise healthy 40 year-old woman doesn’t survive the type of surgery and chemotherapy that I had? So I can’t help but feel like aren’t we all survivors? Maybe it’s not “cancer” or a physical illness per se, but whatever it is, aren’t we are all just trying to make the most of this one life we are given and be here for as long as we can before we die. Isn’t that “surviving”?

And now, almost 18 months out from my surgeries and diagnoses, I am just now starting to understand what it really means to “survive” and perhaps embrace the term a little. I still wish there were a better word or phrase or perhaps not this desire to label people who have been through cancer and just want to move on from it. BUT I get it now, I didn’t before. You see, the “surviving” part doesn’t start happening until the cancer is gone and all of the surgeries are complete. Ironically, the “surviving” part starts when you start really living again. Aside from feeling like “surviving” might be sometimes harder than having cancer, here’s what I know now, that I didn’t at first:

1. Surviving creeps in slowly but surely and serves as a constant reminder that you are now different–even if you don’t want to be.
2. Surviving happens without doing anything or saying anything to anyone. It can’t be stopped or avoided–like a wave in the ocean it can rise high and fall at times. A strong survivor will learn how to ride these waves out as they come and reach out for help if they need it.
3. Surviving is sometimes scary and sometimes empowering. You can’t choose which way it will be but rather just feel and accept.
4. Surviving means that while everyone who was there either professionally or personally has moved on from the most traumatic event of my life, I am just now figuring out what really just happened to me and how I will get back to being me or whatever that means now.
5. Surviving is realizing that my once patient and reassuring doctors, who are now busy and hard to get on the phone and to get appointments with, are just human and have women in much dire situations than me to help now. I need to remind myself that I was once where those women are now and I am grateful that I am not anymore.
6. Surviving is acknowledging that the people in my support network who were and are amazing have all returned to their lives as they naturally should and I am no longer in the front of their minds everyday. As they say–life goes on (and that is a good thing!).
7. Surviving is knowing that I will feel vulnerable and alone sometimes. Remembering to breathe is what I can count on at these moments.
8. Surviving is knowing that I can never go back into the world of never having been a cancer patient.
9. Surviving is still yelling at my kids when they fight or don’t listen because still being here as their mom both to love and raise them is what they need more than anything.
10. Surviving is learning that setting healthy boundaries for myself is the ultimate act of self-care. I am still working on this one!
11. Surviving is happily and religiously taking a little white pill every night, which is the hormone therapy I will be on for the next 5-10 years (depending on the research) to prevent a recurrence, because it brings me peace of mind that I am still doing something to prevent the cancer from coming back.
12. Surviving is learning and accepting that as a result of the life saving efforts I choose to save my life and rid my body of cancer as well as that magic pill I take every night, that I now have osteoporosis at age 42.
13. Surviving is realizing that this is the trade-off I must make.

Most importantly– “surviving” is being alive. Regardless of what label you want to give it, that in and of itself is a gift.

This is what they mean by “surviving”–I am doing it every day–I am a “survivor”. Are you??

Jill

Happy Father’s Day–Reflections of Gratitude

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Many people deal with surgery and treatment in different ways. For me, it was important to have support behind my to lift me up and to help me and my family get through what would be many months of difficult decisions, physical recovery and psychological stress. We chose to allow our community of family and friends into our lives so that I could not only benefit from this support, but so my husband and kids would have teachers, friends and family looking out for their well-being too. I am positive that having this support network enabled all of us to transcend the most difficult moments that we will ever face as a family. There are many different types of support networks on the internet to choose from but I chose Mylifeline.org. I chose this one because it was developed to be from the patient’s point of view rather than a caregiver or friend. Looking back on previous posts keeps me present in my sense of gratitude and reminds me of how far I have come since finishing treatment.

In honor of Father’s Day, I thought this might be a good post to share. Many people do not realize that men can carry and pass down the BRCA mutated gene as women do. Many of these men are traveling their own journey of Hereditary Breast Cancer by either being diagnosed with male breast cancer or other cancers that they are at higher risk for by having the BRCA mutation like prostate, pancreatic or skin cancer just to name a few. I can’t imagine how difficult it would be to not only be going through male breast cancer but to also watch your own daughters go through this journey as a father. Hopefully one day, this will not be the case but for now, I honor these amazing men who choose to help and support the women, daughters, and sisters in their lives. This is not an easy task and takes a very special man. I am grateful I have not one, but three of these men in my life. I am truly blessed. Happy Father’s Day!

Posted on August 8th 2013

I’m Done, I’m Done!!, Recognizing the Men in My Life!

Yesterday was my 8th and last round of chemo! Yay!! Russ and I treated it pretty much like we did all of the other treatments–hoping for it to be uneventful and smooth. Further and further into my treatments, it was getting harder to access my veins but I had met a nurse who I secretly nicknamed “Mean Marie” and quickly came to learn that appearances are not always what they seem to be. Marie has clearly been doing oncology nursing for quite some time and while she may not smile much or make lots of eye contact or conversation- she’s the “go to” woman for getting the IV in. She was kind enough to honor my request for her to start my IV yesterday and magically she got it on the first try! The rest of it was uneventful and I was just happy to walk out of there with no plans to return until 4 months!! Next steps–We have some new decisions to make about follow-up hormone therapy for keeping my statistical chance of a recurrence low but for now I am just happy to be done with Chemo!!! My oncologist, Dr. Domchek, was pleased with all of my blood counts and numbers and how well I fared through treatment. As my acupuncturist said to me on Tuesday, “you are a healthy person who has cancer”. I have been thinking about this a lot this week and honestly it’s what makes me feel like I can get beyond all of this because I look and feel just as healthy as I did before all of this started. So once this last weekend of side effects passes, I only have my reconstruction to finish this fall and then we are moving on with life!!

Over the past 7 months, there have been so many women in my life that have been vital in helping me and my family get through this experience. I could not have survived without these people. I know some people say you find out who your true friends are when you go through a life changing experience like this but honestly I haven’t felt disappointed by one person-in fact it’s just the opposite. My faith and sense of safety in all the love and support that my friends and family as well as so many surprises along the way of people helping has been amazing and frankly pouring out since the day I told everyone of my diagnoses. I am amazed by people’s compassion and ability to support me and my family. But while I am blessed by all of these amazing women in my life, including my mom and my sister with whom I’ve become even closer to in this process, I am extremely blessed to have three truly amazing men in my life who have not only supported me through this process but have shown up for me and inserted themselves into a truly feminine world of woman’s talk of body parts, side effects, doctors, appointments, decisions, and psychological struggle. While I have in the past already acknowledged my husband Russ who has shown so much commitment and devotion to me and my family, I have also acknowledged my Dad who has not only sat through numerous discussions about my body and decisions for surgery but who has become even closer to me through our genetics that we know now are so closely linked. I haven’t though acknowledged my brother, Seth, with whom I have always been close to but through this whole experience have grown even closer to. As a brother watching your sister go through breast cancer, I could only imagine how strange and foreign and potentially uncomfortable all of the conversations both leading up to surgery and after surgery are. My brother Seth was always willing to talk me through anything, was present at my surgery before and after, came to watch my kids and slept over when I need him, came to my oncology appointment in NYC to help me thru the decision of chemo, and continues to support me and call me to check in on me as much as my sister, mom, and girlfriends do. He is an amazing Dad to his two young girls and I know that this experience will make him an even more compassionate, strong and loving father. I feel so blessed to have him as well as my husband and dad to help me through this. My gratitude for these men in my life is immense–these are not easy life experiences for women let alone men and clearly I have been blessed with not only one, but three strong men.

Finally, so many of you have seen me and ask me how I am? It truly has been a rollercoaster but as I am now nearing the other side of all the treatments and doctors appointments there is quite frankly anxiety about being flung back out into the real world again. What and who I will be after all of this is still unsure. I am just taking it day by day and realizing that as all of the treatments subside, how this has all affected me will surely begin to mean something different as time goes on. I know through all of the support I have received from this site as well as my own personal work on my self and the self-supporting therapies I continue to do will help me get me through it all. As I said a while back, I am a reformed “glass empty” kind of girl who is just happy to have gotten through the most difficult life experience one can go through. I have been focusing on some meditations lately and this was today’s meditation that I believe is quite fitting for the ending my treatment and building on the concept of self-love. I hope that you will find it valuable to contemplate for your own life as well:

Miraculous Self

Many of us were taught that it is better to give than to receive. We easily give our time, energy, and attention to our family and friends, yet we may find it difficult to receive these same things. In reality, giving and receiving are different aspects of the same flow of energy in the universe. Just as every exhalation depends upon an inhalation, the flow of love in our lives depends upon our ability to receive and to care for ourselves. As we meditate today, hold yourself in loving awareness and let your heart receive.

Our centering thought for today is:

As I love and honor myself, my relationships blossom.

MINDFUL MOMENT

Today, begin a practice of daily self-care. Begin by making a list of the loving things you can do for yourself this week—then set the intention to complete one of the items on your list every day. Consider posting the list somewhere prominent or maybe schedule a daily reminder on your phone or computer. Here are a few suggestions: write down one quality you love about yourself, remember to pause and take a few deep breaths when you’re feeling stressed, take a walk or enjoy a good meal with a friend rather than grabbing a sandwich at your desk. As you give freely to yourself you’ll experience the loving awareness that is your natural state.

I am sorry for the long-winded post but this may be the last one for a while. I am again so grateful for this platform and the strength it has given me as well as the overwhelming love you have all shown me and my family through your words, actions, meals, etc.

With so much love and gratitude,

Jill

Power to the She!

After I was diagnosed with breast cancer, I decided to try some support groups. But just like when I am buying shoes, clothes, and other large purchases (who am I kidding–really any purchases for that matter!), I’m not good at making decisions–so I tried three different groups as well as private counseling (I’ll save that experience for another post!). And while all three were great groups, I somehow felt connected in a way I never have with the women at FORCE (www.facingourrisk.org). I wouldn’t say I’m not a girl’s girl but somehow I’ve always been a bit of a floater–never truly having a “group” per se. The fact is, I was never really interested in “group dynamics” and all through college I never once considered joining a sorority. It felt time consuming, laden with drama, cattiness, and maintenance, and ultimately a bit confining to me. Even after having children, I somehow never landed in a “mommy” group. Yet, I have to say, there have been times when I’ve somewhat lamented not having a group. I felt envious of those families that vacation together or women who go on “girls weekends” together. The fact is, finding a “group” just never happened for me. But one day when I was at my acupuncture session a few weeks after my mastectomy, my acupuncturist, Dory Ellen, spoke to me about the women at FORCE. She told me that they were an amazing group of women and that I may really like them (we had already discussed my history of being an independent or rather my aversion to support groups or any groups for that matter). She mentioned how they are all “real” women and that anyone who chooses to empower themselves with the knowledge that they are BRCA positive and to actually do something about it is a strong (and pretty awesome) woman. While some of the FORCE women, like me, didn’t know of their BRCA status before getting breast cancer, many of them do know and make the extremely difficult decision to take charge of the health before getting cancer. These are women who want to know their risks rather than hide or pretend like it won’t happen to them. Many of them grew up losing their mothers, grandmothers, and aunts to breast or ovarian cancer and refuse to accept that possibility for themselves and as a result, are willing to do whatever they can to be here for their children and their children’s children. These are women who have the courage to walk through their fears and to show up at their breast surgeon’s office and say “please take both my breast off” and are also willing to thrust their bodies into premature (surgical) menopause by having their ovaries and fallopian tubes removed regardless of the hot flashes (which by the way start instantly), cardiac risk, and loss of bone density they will be faced with for the rest of their lives–All so that they may never get breast or ovarian cancer. These are women who fought for genetic testing and fought against Myriad, the company who owned the patent on the BRCA test that identifies which mutation you have, so that ALL women can have access to testing regardless of socioeconomic status, race, and health insurance coverage (read more about the supreme court case here). These are simply put, awesome women.

When I started this blog–much of my motivation was based on finding the “positive” in all of this. And frankly, this one’s an easy one–The fact is that through my breast cancer and BRCA diagnoses, I found not only my voice and my sense of self-empowerment, but I found my “group”. I have come to love some of these women as if I have known them most of my life. I now get what it means to be a part of something bigger than yourself and to have a place that you know you can go to where regardless of what you say and do, they will accept you for who you are. I have found a place where I don’t have to try to fit in or adjust what I am thinking or saying because these FORCE women all “get it” too. I finally understand what it feels like to “belong” somewhere and to know that no matter what; you always have “your girls”. I finally understand why so many women need and want to belong to a “group”. It is truly sisterhood at it’s best.

A week ago, right in time for Mother’s Day, the other outreach coordinators and I decided to do a fundraiser for our local Philly FORCE group at Athleta. The money raised will go directly to our local chapter to help run support meetings and outreach to those directly affected by hereditary breast and ovarian cancer in our area. I couldn’t think of a better match for FORCE (and Athleta!)–Both organizations stand for empowerment of women and portray women as strong, powerful and vital. It was no wonder we were able to raise $900 in one evening and at the same time raise awareness of hereditary breast and ovarian cancer while shopping! But honestly, if just one person went home and thought about their family history and perhaps decided to get tested before she/he gets cancer, well then the event was a success!

So yes, I needed to get cancer to find my group and I needed to be BRCA positive as well. What I know for sure is that regardless of what you believe in–God, Jesus, Buddha, Allah, higher power, etc., that this was exactly what was supposed to happen in order for me to find my “group”. Yes, I had breast cancer and that was not fun, but what I’ve gained from having breast cancer is beyond immeasurable. I hope that anyone out there that is searching for her place or “group” finds it but my advice would be simple–be careful what you wish for, you just might get it. As my mom would say, “I am without a doubt 100% ‘positive’” of that!

Power to the She!

Jill

P.S. here are just a few pictures from the Athleta Event!

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I Am A Tree

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One of my favorite seasons has always been Spring. Maybe it’s because my birthday is coming up or maybe it’s because everything is fresh and new. Lately though, I’ve been noticing my magnolia tree in my front yard that is in full bloom. It’s only a short time that these beautiful flowers bloom every year but nonetheless it’s breathtaking. But I haven’t been looking so much at the flowers this year–what I’ve been looking at is the scar on the tree. Two years ago, we had hurricane Sandy here on the East Coast (I thought I moved out of South Florida to get away from hurricane season!) and my beautiful magnolia lost a huge branch bringing down a power line with it. I was so sad when this branch fell. I couldn’t help but feel like my tree was now ruined–lopsided with a huge missing chunk. It seemed devastated and marred, yet now, two years later, it’s hard to find the place where almost a third of the tree broke off. You wouldn’t know the trauma that the tree went through a few years back just by looking at it–in fact you would have a hard time believing that the tree suffered at all. I took a picture of it so you can see how it has “healed” itself.

I’ve been looking at this tree a lot lately as well as so many other trees in my neighborhood and I’m amazed and in awe of how many trees have “survived” this past winter and the winter storms before it. They have simply dug their roots into the earth, perhaps even more so than before, waiting out the storms, and are now blooming their flowers and leaves as if those storms never happened. The other day, as I was walking with my loyal yellow lab, and taking this miracle of nature in, I had to stop my walk and take a deep breath and let the tears that had welled up in my eyes pass. I was getting a lesson in nature that I hadn’t expected–this rebirth that I was witnessing right before my eyes hit me deep within.

Maybe I started to get emotional because I realized that I too am perhaps like the trees who have weathered the storms of this past year. At times it seemed like the storm wouldn’t end and at times it seemed like I, along with the trees, wouldn’t “survive” the storm. Yet now, just like my beautiful magnolia tree, I am blooming–experiencing a rebirth, and although I now have scars on my body that I didn’t have previously, (and these gummy bear implants, as they like to call them, under my skin in place of my breasts) as each day passes, the scars become less and less noticeable and I become more and more comfortable with who I am now. I too, like the trees, have learned to dig deep inside myself to find the strength to hold on and stand up even when you feel you can’t. And I too, hope that no one will notice the “storm” I have endured but rather my new growth. And maybe this is why I’ve always loved Spring–it is quite simply a chance to begin again.

My magnolia is still a beautiful tree and I believe it is stronger now that it has weathered the storms. I am here, like the trees, having not only made my way through the physical healing after the storm, but also through the emotional healing that must begin in order to transcend beyond a cancer diagnoses. I am, like my magnolia tree, out there for everyone to see what amazing transformations and healing can come after the storm of cancer and I feel stronger than I ever thought I was. I am sure that there will be more storms–both for me and my magnolia. I am hopeful though that like my magnolia tree, I will survive whatever storms may come and that I will continue to heal-maybe not completely without scars but so much so that each time I pass myself in the mirror, I will recognize who I am now and perhaps will grow more beautiful than I was before simply because I “survived”.

Jill

Grateful to be BRCA Positive

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I know that title probably sounds crazy but after I was diagnosed with breast cancer, I was beside myself in disbelief. Aside from getting a cancer diagnosis, which frankly no one is ever ready to hear, I just couldn’t wrap my head around how this could happen to ME?? I was 40-years old, had no family history of breast cancer (nor any cancers for that matter) and have always lived a healthy, active, life. I never drank or smoked–I basically always checked “no” to everything when you fill out forms in the doctor’s office. Even before stores like Whole Foods and Trader Joe’s were around the corner from everyone, I was driving 30 minutes from wherever I lived to buy food without high fructose corn syrup, organic milk and veggies, and organic whole wheat bread. I have even been a vegetarian, am a certified yoga teacher, and have played competitive tennis since I was a teenager.

And yet somehow I got cancer???

The days and weeks following my diagnosis I remember being out in public–at the supermarket or bank or just picking up my kids. I can recall looking at people around me and thinking to myself, “Why did I get cancer and these people didn’t?”. I wondered what I did to get cancer and if maybe this was somehow my fault. I couldn’t sleep at night. I kept replaying in my mind the potential carcinogens I may have unknowingly put in my body over the past 20 years. My brother and sister were OK so it must have been something I did once we all left home, right? I was afraid to use my shampoo, put on my cosmetics and perfume, or drink the tap water while brushing my teeth. Had I been suppressing my emotions that were now making me sick? I obsessed so much about the impossibility of my diagnoses that it consumed me. The reality was that I just couldn’t make sense of how this could happen to me.

Then, about 3 weeks after my diagnoses, I was on my way to Philadelphia to have my third and final opinion for surgery. At the time, I was deciding between a lumpectomy or a mastectomy. The statistics were dizzying and the facts ever-changing. I felt I needed a PH.D just to make sense of all of the data thrown at me. A new study had just been published out of Duke which found that women diagnosed with Stage 1 or 2 breast cancer who underwent a lumpectomy plus radiation generally had better 10 year survival rates compared with those who underwent a mastectomy. All I heard was “10 years”. In 10 years, I would only be 50. What about in 30 years or even 40 years? My husband kept saying they don’t tell you that because once I made it to 10 years, my chances of dying of something else increased dramatically. While that sounded plausible, I wanted more concrete answers. I had no idea what I should do and how to make the decision. I was completely paralyzed by my situation. I was hoping my final consult with yet another breast surgeon would help. As we were driving to my appointment, my cell phone rang and it was the local breast surgeon who had done my biopsy and genetic testing. She had the results of my BRCA test–I was positive for the BRCA2 gene mutation. I remember pulling over on the side of the road; my mom and husband were with me and I was driving. I don’t remember what the doctor said after the words “positive”, I just remember almost smiling, laughing pretty much at the absurdity of the whole situation. How did I go from being a 40-year-old female who was seemingly more healthy than most of the general population and from a family with no history of breast or ovarian cancer, to a woman with Stage 1 Breast Cancer and now a carrier of a random gene mutation that increased my chances of getting breast cancer in the course of my lifetime to almost 85% in one breast (I had just met that statistic!) and possibly a 50% chance of getting breast cancer in the other breast (a woman in the general population faces about a 12% lifetime risk of developing any kind of breast cancer). In addition to the breast cancer risk, being BRCA2 positive had about a 17% lifetime risk for ovarian cancer (the average population risk is about 1%). It was absurd and surreal and yet at the same time, I felt relieved. Yes, I was in shock and at my visit that day with Dr. Sataloff, who ultimately became my breast surgeon, I’m not sure how I held it together– but I did. I sat in her office and said, “Everything has changed for me now, I want to do a double mastectomy”. She agreed given my BRCA results and, as they say, the rest is history.

For me, getting my genetic test was the start of a new chapter–it was the surprising start of becoming a new version of myself. Getting my BRCA results freed up so much mental and emotional space for me. It took away all of the “why me?” or “how did this happen to me?” talk in my head. It was an answer, a reason, and that was all I was looking for. With a positive BRCA result there were no doubts about what I needed to do. There were no gray areas. There was also nothing I could have done to prevent this–in fact, many women who are BRCA positive get their first breast cancer much earlier than I was when diagnosed. Yes, maybe I could have managed my stress better the year before, gotten more sleep and exercise, or made sure to eat more veggies, but for me–and I stress ME because I respect that this may not hold true for all women out there–getting my BRCA results made it perfectly clear to me that no matter how zen, healthy, evolved, fit, well-rested, or well-fed I could have been, NOTHING would have changed my current situation. There was nothing and no one to blame. For me, that realization brought peace and relief. It somehow all made sense. And somehow in that realization came strength, transformation, and a sense of gratitude I could have never expected.

I am being honest when I say how grateful I am to be BRCA positive. I am grateful to live 50 years after my Great Aunt Dorothy who wasn’t lucky enough to live in a time where treatment protocols and research have come so far that the prognosis is good if not excellent for someone diagnosed with early stage breast cancer. I never met her and have only seen her in pictures as a little girl next to my Grandfather but she is the only woman we know of in our family who had breast cancer and sadly died when she was 43. We live in a time where Preimplantation Genetic Diagnoses or PGD (although controversial) allows a BRCA carrier the chance to not pass on his/her genetic mutation through analyzing embryos for the BRCA mutation and allowing only those without the mutation to be implanted into the uterus through IV fertilization. I am overwhelmingly grateful that research like this will someday change the landscape of how we manage women at risk of hereditary breast and ovarian cancer and ultimately make it so that no woman in my family, or any woman for that matter, will ever have to remove body parts to live free of cancer. I am grateful that I live only 30 minutes from the only BRCA research and treatment center in the country and that the director of that program, Dr. Susan Domchek, is my oncologist. I am grateful that from the moment I heard the words “you are BRCA2 positive”, a shift occurred in me and that this shift not only helped me make a decision about surgery–it shifted me in my core.

There are so many immeasurable and significant “positives” that have occurred since being diagnosed. I am now tireless in my efforts to take back control of a crazy situation and to advocate for myself even when I feel exhausted and overwhelmed. I am able to make strong decisions for myself without regret. I am surprisingly upfront and honest with my surgeons and doctors who have more education and years of internships, fellowships, and residencies than I could ever dream of yet, I am not afraid to say what I feel and speak up when I need to. I have vowed to myself and my family that no woman in our family should ever have this happen by surprise to her again now that we have such powerful knowledge. As part of that vow, I have reached out to close and distant family members to share with them what I have learned about BRCA and it’s implications on our family. I have had difficult but incredibly bonding conversations with my children about my diagnosis and surgery. I have become even closer to my siblings and parents who have armed themselves with the knowledge I have shared and will now make their own strong and informed decisions. I know now in my heart and soul that the man I’ve chosen to spend my life with is and was undoubtedly the exact right person for me and in that knowledge I know that there is nothing we cannot get through in life. I have met and continue to meet so many incredible women through FORCE, an organization that I am now an outreach coordinator for, that is solely devoted to eradicating hereditary breast and ovarian cancer (www.facingourrisk.org). These women are on this BRCA journey as well-– Many of them have seen generations of women suffer or die in their families: Aunts, Mothers, Grandmothers, and Sisters. For them, their decision may have been prophylactic but a powerful stance against this disease that tragically still takes too many lives. I am in essence, the woman I always aspired to be–strong, passionate, determined, happy, grateful, and at peace. Each day, more “positives” reveal themselves–even when I am least expecting it.

I always thought I was a “glass half empty” kind of girl. Perhaps I was. Or perhaps I wasn’t. None of that matters any more. I am sometimes in awe of all of the good that has come since finding out I am BRCA positive. I have thought so much about this and I can’t help but feel that without being BRCA “positive” maybe none of these amazing transformations and experiences would have happened. For that reason alone I am ever grateful to be BRCA “positive”.

Jill

Celebrating Milestones From A Different View

I always believed that I would live a long life—in fact I never doubted that I wouldn’t.  I have longevity in my family.  Three of my grandparents and two of my great grand-parents lived well into their 90s–all of them eventually died of “old age”. Living a long life was my destiny.  Then, in the summer of 2012, I found a lump in my left breast. I was told by two different doctors that it was “nothing”.  They said I had “no family history” so I shouldn’t worry. I pressed the issue and scheduled an ultrasound and subsequent biopsy. On January 25, 2013 the results came back. I had breast cancer– Stage 1 Invasive Ductal Carcinoma. Given my young age, healthy lifestyle, and Ashkenazi Jewish background, a wise doctor recommended that I get tested for the BRCA  gene mutation.  A few weeks later I found out I was BRCA2 positive and that ironically, the one grandparent that died early in my life had most likely passed this mutation to me.  In the blink of an eye, I was faced with my mortality. The “good genes” and the long life I thought was my destiny was now in question.

I realize that I have been blessed to have living grandparents.  At the same time, it has made me see how difficult aging can be and the subsequent challenges that come with getting older. I feared that I would become like my maternal grandmother who had dementia. In the end, she was combative and barely cognizant of her surroundings. My paternal grandmother is alive today at 95 yet sadly, her body is debilitated and riddled with pain. It is a daily struggle to find the balance between her medication and quality of life. Both of these scenarios frightened me—I feared getting old. It all seemed tragic and sad.

On March 6, 2013, I underwent a bi-lateral mastectomy with reconstruction and a bilateral-salpingo oophorectomy. Over the summer I completed 8 rounds of chemotherapy. I am now finished with reconstruction and moving on with life.  Each day, I try to appreciate the moments as they come but frankly it’s the combination of moments, the chunks of time, that I now want to see pass me by.  A few weeks ago, my son turned 13 and while I did look through some baby pictures and wonder briefly, “where’d the time go?”, I mostly felt relief that we made it to the teenage years. I felt a relief I never thought I’d feel at the young age of 42.  A relief that I am here.  A relief that I might be here for a long time to come.  A relief that he is getting older–moving through the major milestones in life and that I am here with him to celebrate, laugh, cry and just be with him.  Mostly, I felt relief that I had survived this past year and somehow came out stronger in the end, healthier in my choices, and stronger in my desire to live for a long life to come.

What was once a fear of getting older is now a daily prayer that I too will experience the privilege of “old age” and that being alive should never taken for granted.