Category Archives: Quality of Life

Reconstruction. Picture This.

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My children love building bricks, building blocks and manipulatives.  They will painstakingly work on designing them according to the instructions to insure that they look exactly like the picture on the box.  When they get knocked over and shattered and pieces lost, after their anger and frustration, they go back to work.  With missing pieces, I’ve still seen them make great designs.  It may not look like the picture or the ideal image that they had, but it still looks good.

I have to continually make sure I keep this in mind.  Breast cancer and life reconstruction – physical, spiritual, financial – may not look like the picture I once had in my mind.  As I’m rebuilding, I haven’t always followed the “instructions”.  But, I’m still (re)building something phenomenal!

Melanie A. Nix – Triple negative breast cancer survivor.  Resilience Coach, Reconstructionist™ and Health and Wellness Advocate.  Always striving to color outside of the lines when defining my new normal.

Role Model in the Mirror

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The road to healing from breast cancer has been full of potholes, detours and navigational challenges.  In these difficult moments, when a straight and uncomplicated path seems elusive, a response is often to seek a mentor, role model, celebrity whose narrative details their navigation from dark days to seeming paradise.

I’ve found myself looking for or renting movies that recount stories of survival, tenacity, resilience and courage.  They highlight the strength of someone I admire for their ability to, against the odds, persevere and prevail.  I’ve used this for motivation; watched the movie or read the books or the magazine article.  It’s fine to look outside for influences that can inspire and motivate us.  But, I know for sure that the most inspiring person with the most motivational story, the most compelling example of fortitude is you.  The role model you seek is the person looking at you in the mirror.

  • The young survivor who pursues her PhD all while managing recurrences and multiple new treatments; a message to breast cancer that you won’t erase my dreams.
  • The mother of two young children who trains and completes a marathon in the midst of treatment; a message to breast cancer that you won’t take my physical strength.
  • The woman who’s battled breast cancer and ovarian cancer multiple times, undergoes a multitude of physically challenging treatments but continues to travel nationally and internationally to advocate for legislation for breast cancer patients and increased funding for research; a message to breast cancer that even if you keep coming, I’ll keep going.
  • The young woman who takes “breaks” from chemo nausea to plan a magical and unforgettable birthday party for her daughter to maintain some normalcy for her young child; a message to breast cancer that you won’t destroy all of the treasured moments in my life.

Sometimes our strength is in simply getting up to face another breast cancer day.  THE FIGHT.  THE GRIT.  THE RESOLVE.  Even in the midst of their breast cancer battles, they fight for themselves and others, hold on to dreams and keep traveling down the road, regardless of potholes, detours and navigational challenges.  Some are your stories.  Some are my stories.  They are a potent reminder of the strength that we all have as breast cancer survivors; of the dogged determination that we draw from a well that may, at times, seem empty.  We push forward against and despite the odds.  The next time you need to be motivated and encouraged, reflect on your own incredible story, tap into your own fuel, step in front of and be uplifted by the role model in the mirror.

Melanie A. Nix – Triple negative breast cancer survivor.  Resilience Coach, Reconstructionist™ and Health and Wellness Advocate.  Always striving to color outside of the lines when defining my new normal.

More Days Like This

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Mel and Ken jazz concert 070616

On Wednesday, I spent the morning and afternoon at the National Cancer Institute (NCI) offering a survivor’s insights on the National Cancer Institute’s study of African American women and breast cancer.  This is the largest ever national study on “how genetic and biological factors contribute to breast cancer risk among black women.” Along with Dr. Damali Martin of the National Cancer Institute, I conducted radio and television interviews sharing this information nationally, especially among African American women.  That evening, my nine year old daughter, Kennedy, and I went to an outdoor jazz concert.  When I was battling cancer, I wished for motherhood moments like this.

My health and my family are a priority!  When I was diagnosed with triple negative breast cancer in 2008, my first prayer was for God to let me see my children grow up.  I was especially concerned because triple negative breast cancer disproportionately affects African American women, young women and there is currently no targeted treatment.  I was increasingly concerned because of my family history; I’m fifth generation in my family to have breast cancer and many of my relatives succumbed to breast cancer in their 30s and 40s.  African American women, while diagnosed at a lower rate, have a higher rate of breast cancer mortality.  All of these factors fueled my concern when I was diagnosed at 38.  My daughter was 19 months old and my son was four years old.  I am blessed that I have been able to watch them during the last seven years and it was nice to end the day with my daughter after being encouraged by the release of NCI’s study.

One of my insights through my cancer experience is the importance of access to information.  I believe that learning as much as I can about this disease and my specific subtype has helped me advocate for myself to ensure that I’m getting the best care.  Seven years later, as my daughter and I listened to the soothing music, the concert ended with a Louis Armstrong tribute and the band played “What a Wonderful World”.  We sat smiling (see picture above) and I thought to myself, it’s indeed wonderful to be able to enjoy this time with my daughter.  As the NCI study on African American women and breast cancer begins, I am hopeful that the findings will ensure ground breaking information that leads to more ways to reduce disparities and ultimately eradicate cancer.  I pray for increased survival and quality of life.  I hope that my daughter and I have many more years of jazz concerts together.  And, I hope that the outcomes of this study will provide many more days like this for me and Kennedy and for African American women who face breast cancer.

For more information on this study visit:

Melanie A. Nix – Triple negative breast cancer survivor.  Resilience Coach, Reconstructionist™ and Health and Wellness Advocate.  Always striving to color outside of the lines when defining my new normal.

 

Thumbs Up from My Kids: Prayers for a Cancer-Free Future for Them

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AACR Cancer Moonshot panel

(Photo of Early-Career Investigators from left to right: Kara A. Bernstein, PhD; Major K. Lee, IV, MD, PhD; Christine M. Lovly, MD, PhD; Paul A. Northcott, PhD; Jose G. Trevino, II, MD)

My 9 year old daughter and 11 year old son give me thumbs up or down when I have to miss an activity in their extremely busy pre-double digits and preteen lives.  They know “mommy works in cancer” and are forgiving if my advocacy conflicts with their schedules.  And, I get thumbs up from both for missing today’s summer afternoon activities as I attended the American Association for Cancer Research (AACR) Congressional Briefing on “Seizing Today’s Opportunities to Accelerate Cancer Research: An Update on the National Cancer Moonshot Initiative and a Dialogue with Early Career Investigators”.

Working in cancer can foster a range of emotions as you see advocates succumb to disease or promising treatments fail to achieve their intended results.  But, the best days are those that highlight advances as well as showcase the current and future generation of researchers and clinicians who’ve dedicated themselves to answering the unanswered questions about the many diseases that are cancer and are searching for more ways to: prevent cancer; expand screening options; increase survival; and ultimately eradicate cancer.

I was beyond impressed with their passion and dedication to not only treating patients, but also educating their patients and being visible in the communities that they serve.  They addressed a variety of topics that impact the current and future standard of care including:

  • NIH funding
  • National Cancer Moonshot Initiative
  • Precision Medicine Initiative
  • Immunotherapy
  • Health Equity
  • Clinical trials diversity
  • Biology of tumors

There was also an encouraging discussion on pediatric cancer.  Beyond discussing these issues, the researchers’ and clinicians’ dedication was palpable.

Their research is so important to me, having lost my young mother, aunt and many young cousins to cancer.  When I was diagnosed with triple negative breast cancer in 2008, I asked God to let me survive to watch my kids grow up.  I appreciate every opportunity to be with them, but also appreciate their understanding of those times when our schedules conflict and I have to miss an activity because of my commitment to working in cancer.  I’m thankful for their thumbs up today.  I left the briefing enthusiastic, reenergized and also hopeful.  I’m hopeful that the work that these researchers do will allow my kids, despite hereditary cancer in our family, to have a cancer-free future.

I’m off to play with my kids.  Today was a great day.

Melanie A. Nix – Triple negative breast cancer survivor.  Resilience Coach, Reconstructionist™ and Health and Wellness Advocate.  Always striving to color outside of the lines when defining my new normal.

 

Blizzard In My Life – The Aftermath (Companion to Periscope)

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Today I started a series of Blizzard Chats on Periscope (https://www.periscope.tv/w/aXeY1zEyODM4NTEwfDFlYUtib0xBcVJaR1hypLERBawL4NlmoM_LCTzjKZpfJU2-GOglFiwJ1mhW1Q==).  I live in the Washington, DC area where Blizzard 2016 dumped about 2 feet of snow on us.  The blizzard, great storm, reminded me of storms in my life; in particular the storm that was my triple negative breast cancer diagnosis in 2008.

One of the greatest challenges of my life was this storm and its aftermath; digging out and reconstructing.  I am a Reconstructionist™ – someone who’s been through the process of rebuilding and healing and continues to do so.  The process of rebuilding and healing, at some points, was unfathomable.  It was a hard realization that, after the storm, my life wouldn’t just return to normal without some work (a lot of work) on my part.  And, now I’m never pushing for normal in my life; I’m pushing for extraordinary.  It’s a serious undertaking and I learned that you can’t get to the business of digging out without getting your tools and resources together.

I’ll be expanding on my future Blizzard Chats on Periscope and blogs, but wanted to provide a few tips for starters.

  1. Get some inspirational music.  I have an aptly titled “Inspirational” playlist on my iPhone that includes all of my motivational music.  My “push” to keep digging out music.  The song that comes to mind immediately is Coming Out of the Dark by Gloria Estefan.  If you don’t have one already, start building your playlist.
  2. Get your inspirational movies lined up.  Cool Runnings, based on the true story of the first Jamaican bobsled team, highlights the team’s perseverance in the face of the seemingly impossible.
  3. Build your unconditional support team.  This applies to family, friends, coworkers, church members. Only UNCONDITIONAL supporters gain entry.
  4. Gather some mantras, Bible verses and uplifting quotations.  I recommend starting with those that are four lines or less. They are easy to commit to memory and be recalled and recited several times a day.

If you’re like me and live in the path of Blizzard 2016, you may be slowed down from the hustle and bustle of life while many offices, schools, streets and buildings remain closed for the big dig out.  I hope that you’ll take this opportunity to use some downtime to start prepping for your big dig out of your storm and begin your own reconstruction.

I’ll be sharing more insights in the coming weeks on the blog and on Periscope.  Let’s reconstruct something extraordinary.

January 26, 2016

Melanie A. Nix – Triple negative breast cancer survivor.  Always striving to color outside of the lines when defining my new normal.

#blizzard2016

#blizzard

#breastcancersurvivor

#triplenegativebreastcancersurvivor

#survivor

 

Give Yourself a Mother’s Day Gift – Release the Guilt and Celebrate Survival

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In the midst of my breast cancer battle and throughout my journey, I’ve struggled with guilt about the things that I was “missing” and “couldn’t” do with my children.  My son was four years old and my daughter was one year old when I was diagnosed.  I had an undercurrent of struggle trying to balance the demands of treatment with the demands of motherhood.

All mothers seem to struggle with balancing and multitasking.  Add to that the weighty struggle of trying to manage chemo related nausea and fatigue as well as the debilitating effects of surgery and a cocktail of pain medications as you try to muster the strength show up for your child’s school play, soccer game or stay awake for Friday night movie night.  Trying to gather the strength to play with your child as you are healing from surgery can be an almost impossibility.  And we tend to bear a lot of guilt for our mostly temporary inability to do so.  And we feel guilty when we can’t seem to do it all.

But, I’m learning that the guilt is unnecessary as our kids thrive and are nourished by our love that comes in many forms: by our physical presence, our hugs, our smiles, our prayers for and with them.

This past Friday, I returned home from a three day school trip with my nine year old son.  I was greeted by my seven year old daughter with a string of kisses and multiple hugs.  She was delighted just to see me, just to be with me.  So I’ll have to remember that I may have missed some things while working to survive, but if I hadn’t missed some things during my treatment, I might surely miss other, bigger moments.  I may have missed some days, but those days that I missed have provided me with many more years with my kids and a chance to celebrate more of their birthdays, other bonding moments, more hugs, kisses and smiles.

If I must struggle to balance something, I should be balancing my diet to keep my risk of recurrence low and my health and energy good.  Yesterday morning, as I walked outside with my daughter to a beautiful spring morning, she said “hello birds, hello bees” in her youthful wonder that was the start of a beautiful family day.  I can’t feel guilty about what I missed because surviving has allowed me to share these precious moments.  I’m working on taking the guilt out of my life and replacing it with constant recognition of the blessings of being able to share another moment with my children, another chance to greet a morning with them, share bonding time with them.

On this Mother’s Day, give yourself a present and let those moments, those smiles, those days with your children uplift your guilt and carry you happily forward in your survival journey. Celebrate your survival and the additional time with your family!

Happy Mother’s Day – May 11, 2014

Melanie A. Nix – Triple negative breast cancer survivor.  Always striving to color outside of the lines when defining my new normal.

 

Lupita Nyong’o Has Learned To Embrace Her Beauty and, As a Breast Cancer Survivor, So Have I

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This month, Lupita Nyong’o was named People Magazine’s most beautiful person of 2014.  I’ve seen her discuss her long road to embracing and owning her beauty, especially as a woman of a darker hue who often faced a dearth of media promoted, similarly hued beauties.  In a different way, I’ve been on a journey to embrace and own my beauty, and strength, during my breast cancer journey.  At 44, I am a 5 ⅓ year triple negative breast cancer survivor.  My breast cancer journey forced me to readjust and redefine many things including my definition of strength and beauty.  At 38, with a 1 year old daughter, 4 year old son and husband of 7 years, I was diagnosed with Stage 1, Grade 3 invasive ductal carcinoma.  But, my breast cancer journey really began 30 years earlier.  At 8 years old, my 36 year old mother was diagnosed with breast cancer; beginning her 12 year fight that ended when her third battle with the disease took her life at age 49.

Many aunts and first cousins were diagnosed with breast cancer and/or ovarian cancer and most lost their battles in their 30s and 40s.  Amidst sadness and loss, I frequently considered my own mortality and questioned if I was living the life that I wanted with so many dreams untouched.  Should I do my own thing or follow convention?  I always returned to a normal “inside the box” life.

Armed with information and learning that I was a carrier of the BRCA1 gene mutation that increased my risk for both breast and ovarian cancer, I began planning my preventive (prophylactic) surgeries.  In the midst of planning my surgeries as well as preparing for Thanksgiving, Christmas and my upcoming 39th birthday, on 11/21/08 I received my diagnosis and became a fifth generation breast cancer patient.  Face to face with the enemy prompted a redefinition of many things in my life, among them beauty and strength.  I promised myself that I would do everything I had to do to survive and work toward a great quality of life.

Beauty is often defined by our vision and varies depending on the lens that we use and whether or not it’s in or out of focus.  Throughout my battle with breast cancer – through the bilateral mastectomy (prophylactic on the right breast), bilateral prophylactic oophorectomy, 16 rounds of chemotherapy, reconstructive surgery (2 times on the left breast and 1 time on the right) – I was readjusting, trying to focus my lens, but my vision was often blurred.  Blurred by my tears as I experienced every emotion – anger, fear, sadness and also joy when I achieved a survival milestone like getting through my first chemo!  Tears of joy, sadness, confusion, faithlessness and frustration.  Tears of hope.  Tears for my late mother.  Through my tears, the image of beauty appeared more clearly, came into focus.  I found clarity regarding the vision for my life.  Ahh, yes, it’s a thing of beauty to have clarity.  And, that clarity drives me to unapologetically pursue my vision for my life.

It’s not about a bucket list, but rather a passport of happiness; one that will be stamped many times a day, filled with beautiful experiences.  My good living is my middle finger to breast cancer.  My redefinition of beauty is having a vision and putting every blessed breath into sculpting, crafting and bringing to life that vision.

As I adjusted and readjusted my lens and found beauty through clarity of vision, I also spent countless hours in the mirror looking at my “new” body.  New scars on my “breasts” from the mastectomy, under my armpits from my drain tubes, and the scar above my right breast that had been the insertion point for the mediport that my doctors urged to prevent my veins from collapsing during or after chemo, allowing me to continue the lifesaving treatment.  Somehow, even though my mastectomy scars were much more pronounced, my teary eyes always focused on my mediport scar.  My intense focus provided a unique connection with this scar.  I transitioned from wearing it like a scarlet letter, to being unafraid if it showed because I likened it to a red badge of courage.  I’ve grown proud of this symbol of my strength.  After everything that I faced, and even with a scarred body, I still look at myself with pride.

While looking through that lens, my strength was redefined as a covenant.  Strength is honoring the promises you make to yourself, like the one I made to do everything I had to do in order to survive.  Again, the redefinition was only made clear through focus; keeping promises to myself even when confronted with seemingly insurmountable challenges; focused on living my vision.  Many dreams I had are no longer untouched.  I’m busy doing a lot of stuff that I love, including co-founding Breast Cancer Comfort Site that is a wellspring of lessons and guidance for breast cancer survivors to plant new seeds and flourish during and after breast cancer treatment.   After being nearly sidelined by the draining and debilitating effects of chemo, I’ve turned the corner and last month I ran my first half marathon.  I ran all 13.1 miles without stopping.  And, two weeks later, I did a 10K.  I’m unstoppable, beautiful and strong.

April 24, 2014

Melanie A. Nix – Triple negative breast cancer survivor.  Always striving to color outside of the lines when defining my new normal.

 

 

I Love The Snow Part 2

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It snowed again yesterday and there are forecasts for more today.  This snow was the biggest so far of this long snow season and has covered almost everything.  As I mentioned in my 1/28/14 blog “I Love The Snow”, I find snow calming, but I also find it beautiful.  It looks like a white blanket that is perfectly “placed” over whatever is underneath.

Before it gets muddy and mixed with environmental elements, I can spend a long time looking at it and admiring its beauty.  Gazing on a thing of beauty, having something beautiful surrounding you or having something beautiful to admire every day can be an important source of positive energy.  A beautiful environment or surroundings can enhance your mood and energy.  It can be something that you physically have – an aquarium, beautiful flowers or a picture of something beautiful like the picture of a beautifully architected and appointed structure or a picture of a beach with clear blue water.  Whatever it is, at least once a day, find a thing of beauty and spend some time getting lost in the beauty and drawing some positive energy.

February 13, 2014

Melanie A. Nix – Triple negative breast cancer survivor.  Always striving to color outside of the lines when defining my new normal.

World Cancer Day 2014: Cancer is Busy, We’ve Got to Be Busier

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Yesterday I had my oncology check-up.  The waiting room was packed, almost standing room only.  All kinds of patients.  Some were there with family members and caregivers; some alone; different ages; different races; some with full manes and some with glistening bald heads.  As I sat waiting to be seen, I kept thinking something that I’ve thought many times before: cancer is busy.  But, we’ve got to be busier with deliberate and decisive action.  We must be constant activists and change agents to find cures, vaccines and eradicate cancer.

Melanie A. Nix – Triple negative breast cancer survivor.  Always striving to color outside of the lines when defining my new normal.

I Love The Snow

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It’s snowing outside tonight.  This is about the third snow in as many weeks.  I love the snow and am excited to see it, probably because watching it fall beautifully and blanket the world around me is mesmerizing, almost hypnotic.  It’s calming.  It won’t snow every day, but I try to do something every day that is calming – listening to a favorite song, reading my Bible or an inspirational verse, or watching video that I took of the ocean while at the beach.  The sound of the ocean is even higher on my list than watching snow fall.  We all need things to calm us and take our mind to a peaceful place.  Find yours and try to do at least one every day.

January 28, 2014

Melanie A. Nix – Triple negative breast cancer survivor.  Always striving to color outside of the lines when defining my new normal.