Congress and Senate – I am Your Preexisting Condition

When I lay on my hospital bed (many times) or in my chemo chair (many times), with tears in my eyes over the pain and despair I had, I would have to confront the urge to quit.  I was chemo exhausted and physically spent, at times, not wanting to go back to chemo or deal with anymore cancer news.  Although there were moments of doubt and times when I wanted to give up, I never did.

I’m ominously reminded of those hospital and chemo days.  I’ve been sitting watching the news crying and exhausted with all the health-care debates and seeming disregard for humanity as votes are cast and decisions seem to be made without regard to the true human toll or catastrophic consequences.  As I wrote in my letter to Representative Steve Scalise (Majority Whip) and Representative Paul Ryan (Speaker of the House), “I hope you will consider citizens like me, a triple negative breast cancer survivor, when you cast your vote on any changes to health-care legislation.  My eight years of survival, once considered a blessing, now possibly a curse as preexisting conditions are at the center of the proposed health-care bill.  I’m concerned that the proposed health-care law changes will be deleterious.”  And I’ll be honest, I’ve cried a lot over the past 24 hours.  I empathize with those on the news who speak about how their life, truly, depends on affordable care.  But, just as I’ve done in the past – weary, worn and wearing my cancer battle scars – I’m emboldened because this fight is not over.  One thing you may not know about people with preexisting conditions (you’ll learn quickly) is that we are fighters.  We’ve had to fight to survive and we know a lot about fighting!!!

It’s interesting that so many medical organizations responsible for the care and treatment of Americans opposed the American Health Care Act.  But so many of you thought it was a good idea anyway.  Oh, and by the way, I saw so much news about the American Health Care Act vote, but didn’t see the news on whether Congress voted to retain preexisting coverage for themselves and their staff.  Hopefully, this was just overshadowed by the other “celebrations” of the day.

Well, my tears are dry.  I am a preexisting condition and for every legislator who chooses to callously vote on the “better” economics of this act, I’m now your preexisting condition. You can do things like you did today, let your voicemail get full and choose not to take calls because, as your voice message stated, “it’s one of those days”.  I’ll remember all of my chemo and surgery days, all of the days wondering if I’d live to see my kids grow up and if I’d have insurance coverage to help me sustain my life to do so.  Yes, I plan to have a lot of “those days” and I’m encouraged that I’ll be joined by millions of others.

Preexisting conditions – sickness – are those things that are always around; sometimes at the forefront, sometimes in the background, but ever present.  Their presence can be annoying and irk the $*## out of you.  They can zap your energy and take a potentially good day to a day from hell.  Often, they can make life difficult at best; sometimes hellish.  My triple negative breast cancer can be considered a preexisting condition.  And, with this new legislation, there’s the possibility that I could be a person relegated to the high-risk pool of uncertainty.

I’ll be excited during your 2018 reelection bid to put you into a high-risk (election) pool.  This was never partisan, it is personal.  And I’m taking it very personally.  I am your preexisting condition.  Hello.  I won’t go away.  Preexisting condition.  Survivor.  No quit in me!!!

Melanie A. Nix – Triple negative breast cancer survivor.  Resilience Coach, Reconstructionist™ and Health and Wellness Advocate who chronicles life after a breast cancer diagnosis.  Living my manifesto,  Soul of a Survivor, and always striving to color outside of the lines when defining my new normal.

Thank You POTUS 44

President Barack Obama delivers a statement on the Affordable Care Act in the East Room of the White House, May 10, 2013. (Official White House Photo by Lawrence Jackson)

President Barack Obama delivers a statement on the Affordable Care Act in the East Room of the White House, May 10, 2013. (Official White House Photo by Lawrence Jackson)

Mel with PresidentMel and Ray with VP

Mel with VP

Thank you, Mr. President, Mrs. Obama, Vice President Biden and Dr. Jill Biden.  Extraordinary job.  Phenomenal Service.   We will continue to pray for you and your families.  THANK YOU!!!

Melanie A. Nix – Triple negative breast cancer survivor.  Resilience Coach, Reconstructionist™ and Health and Wellness Advocate who chronicles life after a breast cancer diagnosis.  Living my manifesto,  Soul of a Survivor, and always striving to color outside of the lines when defining my new normal.

Farewell President Obama, Health Advocate-in-Chief, and Thank You

Dear Mr. President:

Last night, I watched your Farewell Address.  At times, I was so filled with emotion that tears streamed down my face, clouding my vision, but still allowing me to take in an earful and digest every word like a dehydrated person savoring each precious drop of water; quenching this thirst by continuing to provide hope that has propelled us for the last eight years.  Hope and faith are inseparable cousins.  You spoke about “…that faith that I placed all those years ago, not far from here, in the power of ordinary Americans to bring about change — that faith has been rewarded in ways I could not have possibly imagined. And I hope your faith has, too.”  In the annals of the American presidency, let history reflect that my faith has been rewarded throughout your two terms.  Thank you.

During the vociferous “four more years” chants, the crescendo invoked my lamentation when I pled for more time.  I cried tears of joy on November 4, 2008, the night of your first election.  Three weeks later, I was inconsolable as I cried tears of sadness and fear when I was diagnosed with triple negative breast cancer at age 38.  Breast cancer killed my 49-year-old mother after her initial diagnosis at age 36.  I asked God to let me watch my one year old and four-year-old children grow up.  You began your post-election transition to the highest office in our country.  I was transitioning into the depths of my own hell.  You promised change.  I struggled with my faith.

On the stormy sea of change, I began my course with a bilateral mastectomy.  A month later, on an unseasonably cold day, my husband and I braved the elements and traveled by car, subway and a several block walk (pre Fitbit, but I surely would have easily gotten 15,000+ steps that day as well as a serious badge) to get to the National Mall and watch your inauguration.  My plan to start chemo on this Tuesday was delayed a week because my oncologist’s office in Washington, D. C. recognized the day as well as understood what a logistical nightmare it would be trying to get around.  Like millions in the city who had come to witness you taking your oath of office, I was elated.  But, my euphoria was eclipsed by my angst about the days ahead.  You reiterated your vow to the American people – change.

Mel Ray Inauguration

(Me and my husband, Ray, at President Obama’s 2009 Inauguration)

You were busy leading the country and I was busy managing my chemo schedule.  On disparate paths, we shared a common focus on health care.  In a chemo induced nauseous, exhausted haze, I watched your 2009 State of the Union Address and was regenerated when you discussed health care reform and announced “… a new effort to conquer a disease that has touched the life of nearly every American by seeking a cure for cancer in our time.”  Like you, I lost my mother to cancer.  I also lost four cousins and my favorite aunt to cancer.  As I awaited each brutal chemo treatment and detested getting my biweekly infusions, when fear and hopelessness were my constant companions, you provided an infusion of hope and quickened my faith.

Meanwhile, Mrs. Obama was building the framework for her Let’s Move! Initiative and planted the White House Kitchen Garden.  Her efforts to combat childhood obesity and promote healthy lifestyle choices can reduce morbidity and mortality.  I vehemently hope that I don’t pass to my children my genetic mutation for cancer, but instead pass on to them a healthy lifestyle.  It’s consequential for them to also have Mrs. Obama as a role model and champion.  Learning more about Mrs. Obama’s health-centric initiatives continued to kindle my faith.

I adjusted to my new normal after surgeries and chemo, a cancer free life, and you continued reform as Health Advocate-in-Chief.  You signed the Affordable Care Act into law on March 23, 2010.  With this legislation, some cancer screening services are covered under insurance plans at no extra cost; it ended the lifetime dollar caps on coverage; and also prevented a ban on coverage for pre-existing conditions.  It was a blessing for me given my family history of and battle with breast cancer.  As a woman who will be under the care of my medical team for the remainder of my life, which I hope is long, I depend on being able to see my oncologist, internist, surgeons and OB/GYN at least once a year.   The Affordable Care Act ensured this for me.   Another infusion of hope from you.

I had the honor of standing with you and other health advocates before Mother’s Day 2013 as you underscored the benefits of the Affordable Care Act and also highlighted benefits specific to women and mothers.  It was a privilege to stand as a healthy mother of my growing children when a few years earlier the future was uncertain for me.  Happy Mother’s Day.  The power of faith.

President Barack Obama delivers a statement on the Affordable Care Act in the East Room of the White House, May 10, 2013. (Official White House Photo by Lawrence Jackson)

President Barack Obama delivers a statement on the Affordable Care Act in the East Room of the White House, May 10, 2013. (Official White House Photo by Lawrence Jackson)

Your first term accomplishments and future plans earned you mine and millions of votes to be elected for a second term.  This time, I braved the unseasonable cold with my 8-year-old son and 5-year-old daughter in ski suits so that they, too, could witness history at your second inauguration.  You continued your work with the scientific and medical community and in your 2015 State of the Union Address announced your Precision Medicine Initiative to improve health care delivery “to enable a new era of medicine through research, technology, and policies that empower patients, researchers, and providers to work together toward development of individualized care.”  When you launched the initiative, it was another great opportunity for me to join you, fellow cancer survivors and health advocates.  We were buoyant as you outlined the patient benefits.

Precision Medicine Initiative and Health Advocates

Precision Medicine Initiative

You delivered additional patient benefits.  In your 2016 State of the Union Address, you announced the Cancer Moonshot Initiative with Vice President Biden at the helm. And because he’s gone to the mat for all of us on so many issues over the past 40 years, I’m putting Joe in charge of Mission Control. For the loved ones we’ve all lost, for the families that we can still save, let’s make America the country that cures cancer once and for all.”  You shared that this initiative “…aims to bring about a decade’s worth of advances in five years, making more therapies available to more patients, while also improving our ability to prevent cancer and detect it at an early stage.”  You implemented a plan to provide lifesaving cancer research.  Thank you Vice President Biden and Dr. Jill Biden for your fierce and steady health advocacy.

Cancer Moonshot Initiative

Each year, I’ve celebrated my survival milestones and also the progress that you made with lifesaving health reform.  Through the Affordable Care Act, the Precision Medicine Initiative, and the Cancer Moonshot Initiative, you delivered your promises.  When I’m older and speak to my grandchildren about your extraordinary place in history, I’ll also share with them many more initiatives, programs and legislation that you promoted in our democracy.  I’ll celebrate your two-term presidency.  You provided a lighthouse when I treaded stormy and uncertain waves of change on my survival journey.  As our country’s first African-American president, I’m sure that I’ll be overcome with emotion every time I relive your historic presidency.  More than a leader, you are a teacher and a role model.  You are an admirable global citizen and a standard bearer of excellence who inspires the best and delivers hope.

With pride and gratitude, I thank you, Mrs. Obama, Malia, Sasha, and Mrs. Robinson.  Thank you Vice President Biden and Dr. Jill Biden.  I wish you many blessings.  Godspeed.  My faith has been rewarded.

Melanie A. Nix – Triple negative breast cancer survivor.  Resilience Coach, Reconstructionist™ and Health and Wellness Advocate who chronicles life after a breast cancer diagnosis.  Living my manifesto,  Soul of a Survivor, and always striving to color outside of the lines when defining my new normal.

Because I Can

Last week, I resumed my three times a week jogging routine.  Today, with temps in the 20s, I still got in my 4.5 mile outdoor run this morning.  Prior to resuming last week, I had taken a two-and-a-half-week break; initially because of a cold and then because I was thoroughly enjoying being a holiday couch potato.  I definitely value rest and relaxation (see A Restful Mind and a Recharged Spirit ).  I really enjoyed my holiday break.  So, it took me some time to get motivated and when I started back was running at a slower than normal pace.  But, I got my 3 runs in last week and plan to get them in this week, too. 

Running for me is almost addictive.  There are so many personal benefits.  I get my daily physical activity.  The health benefits of exercise are proven and I’m especially mindful of trying to help reduce my risk of breast cancer recurrence.  For me, I also benefit from the stress relief that I find during and after my run.  I solve all of the world’s problems while I’m jogging.  I’ve found it to be a fairly easy and inexpensive form of exercise since I run outside and don’t require a gym membership or treadmill.  It definitely contributes to my health and wellness.  But most of all, I do it because I can.

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Not so long ago, I wasn’t jogging, but sock collecting.  I have a drawer full of hospital socks, the ones you get when you have a diagnostic test or when you’re in the hospital.  They have the slip resistant material on the bottom to keep you upright when you start walking (post surgery or post medical procedure).  Through my breast cancer survival, I’ve collected a lot of these socks and wear then around my house.  They are comfortable, but they are also a reminder of hospital stays, including my mastectomy (breast removal surgery), my oophorectomy (surgical removal of my ovaries) when sitting up in a hospital bed was a task and walking even short distances seemed almost impossible.

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In addition to my hospital sock collection, I’ve also collected quite a few pair of running shoes.  For the shoes that I’ve worn out, literally to no tread, I keep them as work shoes.  In the last four years, since I’ve taken up distance running, there have only been a few weeks that I’ve taken off, mostly due to a cold or ailment.  For someone who hasn’t been disciplined in every area of my life, this is one area where I’m focused and disciplined.  I’ve completed 5 distance runs (four 10 mile runs and a half marathon of 13.1 miles).  I’ve also completed some distance walks.  I average 1 -2 distance runs annually.  I don’t run for speed.  I run for completion.  When I’m not training for a distance run, I run as part of my routine.  I’m not trying to qualify for one of the storied international marathons.  I might one day, but it’s not my goal.  I run because I can.

When I had my breast cancer surgeries and treatment, putting on a pair of socks and shoes for a walk around the block was as unthinkable as a 10-mile run.  I’ve said it many times before that as I was laying on my back in a hospital bed or sitting exhausted in my chair while I was getting chemo any activity seemed like an impossibility.

But, I kept a vision of “life after”.  I didn’t know what exactly it might look like.  I didn’t envision distance runs, but I envisioned more than laying on my back or sitting exhausted in my chair.  So, 8 years later, I run because I can. 

2017

I’m not really making resolutions this year, but more declarations.  I’m bringing back music to my life (see Bringing Back Music to My Life in the New Year).  As a cultural tourist, I’m keenly aware of the fact that as we age we tend to become confined by cultural norms or expectations.  There are a lot of unwritten rules to follow and abide by as an adult.  We do things, mostly the fun, imaginative, adventurous stuff of our dreams, somewhat apologetically.  We put off our plans because it doesn’t seem to be the right place or time.  We do only what’s necessary and not necessarily what’s fulfilling because it’s what we are supposed to do.  But, I’m going to live the way I want to, with an even bigger vision, because I can. 

Today I will __________ because I can. 

This week I will __________ because I can. 

This month I will __________ because I can. 

This year I will __________ because I can. 

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Fill in the blanks.  This year, I’m making my own rules and I’m going to live my life bigger and better than ever, full of fun and laughter BECAUSE I CAN!

What’s yours?  Please share.  I look forward to hearing from you and making 2017 a Because I Can year!

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

Be Careful When and Where You Park

For many, the last 1-2 weeks have been holiday, downtime or vacation.  Many are off from work and school, some have vacationed and others, hopefully at least, have reduced their workload and to do list and relaxed a little.  As I prep for return to work and my kids getting back to school, back to a busy and often extremely hectic schedule, I’m mapping out my week and planning for meetings, school events and getting my plans together.

I’ll admit that I normally am running late or just on time.  This is the result of me trying to squeeze in one last thing; a habit I’m working on changing.  With me running late, I generally find limited parking options and pull my car in wherever I can, jump out and walk/jog/run to wherever I have to be.  And if it’s a crowded meeting, I usually get the worst seat where I can’t see or hear very well.  Consequently, when my meeting is over, I often have to “remember” where I speedily parked my car.  It’s a time waster and my car is usually a bit further away from where I am because the close-up spots are “reserved” for the early comers. 

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But this summer, my kids attended a new camp.  Every day, during pick-up, I’d watch the traffic pile up which created a longer wait and more difficult time to get back to the main roads to get home.  Because I had to pick up my kids before the end of my work day, I needed to get them quickly to get back to work responsibilities.  I quickly devised a plan.  I would get to camp a few minutes early to get a prime parking space.  I started parking my car in the same spot every day.  I always pulled in, turned and park in the direction headed toward my next appointment.  The space where I parked was out of the heavy traffic and allowed me to quickly pick up my kids and bypass the traffic to get on the road. 

The process was so smooth and efficient that I’m working to adopt it in my other planning.  Somewhat simple, but impactful lessons, especially as I prepare to WIN 2017.  There’s a path that I want to take.  I need to be parked in the best space that will allow me to be prepared and ready to move, sometimes quickly, in that direction.  Traveling a little earlier will allow me to avoid bottlenecks.  The best parking space has several advantages.  I’ll keep this top of mind.  Be careful when and where you park.  Moving forward.  Ready. Set. Go!

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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.

www.breastcancercomfortsite.com/blog

Bringing Music Back to My Life in the New Year

After a subpar childhood piano career, I resumed my piano lessons when I was 35 years old.  I remember how I jumped up and down and celebrated when the used black upright piano that I purchased was delivered to my house.  Even as the mother of a 13-month-old son, I was dedicated and likely the most disciplined I had been.  I was faithful to my lessons, my practice and focused on becoming an accomplished pianist. 

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I love music and wanted to fill my home with countless piano “concerts”.  I envisioned my family sitting around the piano and Christmas tree during the holidays as I performed a list of traditional holiday favorites as well as performing concerts throughout the year where I played a variety of genres. 

As an adult, I remember nervously sitting next to kindergarteners as we prepared for our spring recital in 2008.  After the birth of my second child, this was my first recital in almost 20 years.  My emotions vacillated between excitement and frustration; excitement that I was pursuing my piano dreams and frustration that I hadn’t been a better childhood student and hadn’t mastered the piano at almost 40.  Nevertheless, I was excited to be performing a culmination of a few years of lessons that had me proud of what I had recently accomplished and further lit the fire under me to keep getting better.  Despite a few missed keys, the spring recital was great and I beamed with pride as my family and friends got to see my hard work.  Despite being a working mother of two (I had recently taken a much-needed break from corporate America), I was able to maintain my family focus while making piano lessons a priority and working on my other professional endeavors.

Until that devastating derailment also known as my triple negative breast cancer diagnosis.  In my sudden and immediate change of priorities to better understand my breast cancer subtype, research treatment options, physicians and focus on survival, I withdrew from my upcoming fall recital. 

That was 8 years ago.  Aside from the occasional moment that I plunk at a piece from my childhood or adulthood recitals or some of my half-written songs and a few comical attempts to provide lessons to my family, the piano has sat largely unused.  Sometimes dusty and out of tune, it represents a stark contradiction to the dedicated days of practice, my scheduled piano tunings and appreciation for the instrument and music I was able to produce. 

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The years since my breast cancer diagnosis have been filled with highs and lows, a challenge as I find my way in my new normal.  Dreams I once had have been replaced by new dreams.  U turns have been a large part of navigation in my new normal.  Reconstruction has been an overriding theme.  As 2016 closes with another year of survival, another holiday and my 47th birthday, resolutions I used to make have been replaced by one simple declaration for the year ahead.  I’m bringing back the music to my life! 

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Things that were out of tune and dusty in my life will be dusted off, tuned with a refocus to have beautiful melodies today and the next day and the next day.  This is a work in progress.  I look forward to recommitting myself to some of the things I “lost” and making my new normal more bright and beautiful. 

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I pray that there’s also beautiful music for you in 2017.  I’ll keep you posted and hope to hear about your 2017 adventures. 

Happy New Year!

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 your new normal.

www.breastcancercomfortsite.com/blog

 

Celebrating Breast Cancer Survivors

On this first day of National Breast Cancer Awareness Month, and every day, I celebrate survivors.  For me, you become a survivor the moment that you are diagnosed with cancer; the moment that you become aware that cancer is in your body and make the decision to battle, to survive.  Not when you begin or finish treatment, not after surgery, but the moment that you are diagnosed.  That’s my definition.  Surviving is hard, no doubt, but truly a blessing. I draw strength and encouragement from my survivor sisterhood.

Your strength is unmatched. Your grace is remarkable. Your courage is unquestionable. Your faith is unshakable.

The soul of a survivor is that of the phoenix rising from the ashes. The incomparable and unconquerable spirit that is imbued with fortitude.

Beautiful and radiant.   You have spread your winds and soared to heights that most never reach. You are standing on a peak that belongs to you and you alone.  Dance, sing and praise yourself! You are a breast cancer survivor!

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 your new normal.

Star Gazing – Watching and Waiting

I consider myself a cultural tourist, a pop culture star gazer.  So many of us want to know what’s happening in the lives of celebrities.  I’m certain that that’s what’s contributed to the rise in popularity of so many reality shows that chronicle the day to day lives of stars; why we sometimes don’t mind waiting in line at the grocery store to get another peek at the cover story detailing what’s new in the lives of singers, actors, TV personalities, and sports figures.  I’m not so “devoted” anymore, but there was a time that with each new publication or each new episode, I’d be watching and waiting to see what’s next.

Today I got a chance to see some of my most admired superstars and did a different type of star gazing.  I was at the briefing for the release of the American Association for Cancer Research (AACR)’s Cancer Progress Report 2016.  I had the opportunity to hear from some superstars – researchers and doctors who are paving the way for more breakthroughs that can increase survival and quality of life.  I got to hear from superstars, the survivors and their families who have faced grim prognoses, but with determination and their own research, took newly approved cancer fighting therapies and participated in clinical trials.

The leadership of the AACR provided an overview of some key focus areas:

  • Precision medicine
  • Immunotherapy
  • Prevention

They provided an overview of recent FDA approved cancer fighting drugs.  There was also an overview of the Cancer Moonshot Blue Ribbon Panel’s recent recommendations.

It was an information rich day and, as happens whenever I’m in the presence of other cancer survivors, I was so inspired.  I think researchers and survivors agreed that there is still much to be done.  But, equally, we are encouraged by the progress in the cancer fight.  In addition to my pop culture star gazing, I include these among the most admired celebrities.  The children, women and men who brave cancer, their caregivers and the researchers and doctors who develop and administer the cancer fighting and lifesaving therapies.  I’ve said that I hope to see an end to cancer in my lifetime.  I’m always encouraged by progress.  So for these celebrities, for the next breakthrough, I’ll be attentively watching and waiting.

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.

My Reasons to Stand Up to Cancer

Tonight I’ll watch Stand Up to Cancer The 2016 Show and it will certainly get me thinking about my reasons to stand up to cancer.  In July, my daughter looked at the ground and asked me “how is that plant growing through the concrete?”  We had seen a plant that was growing in seemingly the least optimal circumstance.  When we got to my computer, I did a quick search and learned that the plants aren’t actually growing through the concrete, but that they are growing through cracks in the concrete because they can grow anywhere there is water.  But, they appear as if they are growing through the concrete.  Like plants that grow straight up, looking like they are standing, I’ll continue to use the nourishment that I’ve received to push through the challenges brought by cancer and I’ll stand up.

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I’ve enjoyed having these types of conversations with my children; moments of curiosity and wonder.  These are moments that I wasn’t sure I’d have since my daughter was barely talking when I was diagnosed with triple negative breast cancer on November 21, 2008.  I was a 38 year old married mother of a four year old son and a 19 month old daughter.  My first prayer was for God to please allow me to watch my children grow up.  As a fifth generation breast cancer patient and a carrier of the BRCA1 gene mutation, I was extremely unsure of my future.  It felt like concrete had been poured on me, stopping me right where I was.

Right where I was, mostly, was lying on my back.  When I lay in the hospital after my bilateral mastectomy, feeling weak and sick, I was still very unsure of my future.  When chemo brought me exhaustion unlike any I’d ever experienced, an easy walk down the street seemed a distant memory and everyday tasks that I had done without thought now required planning and preparation.  Curled in my bed trying to manage the effects of nausea and barely able to muster enough strength to get up, I was unsure.

But, with each passing day, with the care of my wonderful medical team, the care, love and support of my husband, family and small group of friends, I made progress moving toward my positive prognosis.  Days where I could barely get out of bed have been replaced with days where I run 5 miles.  Prayers to watch my children grow up continue and are accompanied by prayers of thanksgiving that I elatedly walked my soon-to-be 12 year old son into sixth grade and my nine year old daughter into fourth grade for the first day of school this week.

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Surviving isn’t easy.  This has been a long and hard journey, but I’ve gone from lying on my back in a hospital bed too weak to do much of anything to getting out of bed each morning, putting both feet on the ground, standing up cancer free.  I stand up because I can!  I’m blessed and grateful.  I wish my mother, my role model, a woman who taught me what it means to survive and to live beautifully, could see me.

I stand up for my mother.  My beautiful, loving, supportive, phenomenal mother.  My personal and professional role model.  My friend.  My mother was the woman who nurtured me and showed me what it means to live her favorite mantra “bloom where you are planted”.  She didn’t write a someday bucket list; she lived life fully in the face of cancer.  She put in and got the most out of every day.  25 years ago, my 49 year old mother died of metastatic breast cancer after a 12 year battle with multiple recurrences.  She was a light and when she died, a part of my world went dark just like concrete had been poured over me.

The darkness was brightened by the birth of my children.  I stand up for my son and my daughter.  Without ever knowing my mother, they have so much of her in them.  They have her mannerisms and, most of all, a big, loving heart and a beautiful spirit.  I’m blessed with each day with them.  I’ll stand up to make sure that in their lifetime the toll, death rate and devastation from cancer is reduced, eliminated.

Without ever knowing my mother, my children had a surrogate maternal grandmother in my Auntie Zora, my mother’s baby sister.  I’ll stand up for her.  A strict disciplinarian during my youth, she provided a laid back and care free, nurturing environment for my babies.  Grand Nanny Z, as they called her, was truly grand and we all suffered when she died of metastatic ovarian cancer in 2013 after a 30+ year cancer battle and multiple recurrences of breast cancer and ovarian cancer.  She and my mother were some of the most respected cancer advocates and stood up for many.  They especially worked to reduce breast cancer disparities in African American women.

This has been the fight of my life.  My road from cancer has been painful and the losses provide the most excruciating pain that is with me every day.  But, the light that my mother provided, the roots that she planted in me by showing me how to live her favorite mantra “bloom where you are planted”, the advocacy that my mother and my aunt showed me drives me to keep advocating for myself and others.  I stand up for me.  I stand up for my children who bring so much light to my life.  I stand up for my late mother and my late aunt.  I stand up for those who are too weak, too incapacitated by cancer to stand up right now.

And, I know that I’m not alone.  My husband, Ray, who loved me back to life, is standing up with me.  My sister, Monica, my caregiver, first and closest friend, is standing up with me.  My sister-friends who are part of my family and helped push me through treatment and dark days are standing up with me.  I’ve got my friends at the American Association for Cancer Research (the scientific partner to Stand Up To Cancer); my friends at the National Cancer Institute; my friends at Young Survival Coalition; my friends at Black Women’s Health Imperative; my friends at Facing Our Risk of Cancer Empowered; my friends at Capital Breast Care Center; and my friends at the Thelma D. Jones Breast Cancer Fund; all of whom I’ve worked with to eradicate cancer.  These organizations have so many researchers and advocates who are fueled by moments of curiosity about the hows and whys of cancer that yield moments of wonder with each new breakthrough.  With Vice President Joe Biden’s Cancer Moonshot Initiative “with the goal of making a decade’s worth of progress in cancer prevention, diagnosis, and treatment in just 5 years”, we’re continuing to make progress.

I’ll watch tonight as I do every time the program airs.  I’ll remember the year that my aunt attended the live broadcast.  I’ll laugh at some of the comedic sketches and I’ll cry at some of the vignettes, many that will stir emotions about my battle and those of my mother and my aunt.  But when the credits roll, I know I’ll be further energized and I’ll continue to stand up.  I’ll be fueled by the days when I spent most of the day lying on my back.  Like the plant that appears to grow through concrete, I’ll keep pushing through every obstacle, finding a crack, a place where there is water and light to sprout up.  I’ll continue to fight through imperfect conditions that cancer places before me and I’ll continue stand up to cancer.

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.

5 Important Lessons on Being Grounded

On Monday, I discussed a postponed beach trip, but why I’m keeping my bags packed anyway.  (I’m hopeful that this weekend I’ll get there).  But, it put traveling and road trips on my mind.  I’ve had a few instances where a flight was grounded and a trip turned, unexpectedly, into an extended or overnight trip.  When making alternate arrangements and thinking about the time I was losing, I was irked and irritated by being grounded.

I’ve hated being grounded.  I’m impatient.  As a reconstructionist™, having dealt with the physical, spiritual, emotional and financial devastation that comes with life-threatening illness and life devastating events, I am always eager for an uncomfortable or bad situation to quickly change.  I’m always looking for positive change.

I’ve been grounded a number of times, by flight cancellations, and by my late mother disciplining a young mischievous daughter (me).  I’ve also been grounded by a job layoff, business opportunities that failed and relationships that fell apart.  When I was diagnosed with triple negative breast cancer, I was grounded by the physically, spiritually, emotionally and financially debilitating effects of treatment.  Each situation triggered anger, irritation and impatience.  A forced delay in my plans has never been good.  Or has it?

grounded-airplane

The irony is that while being grounded seems a waste of time, it can actually be a gift of time.   As I reflect now on life’s delays and plan changes, I realize that being grounded is sometimes the ultimate gift of more time to rest, plan, prepare, and perfect; to be fully ready to take advantage when my best opportunity arises.  It’s my choice how I use my time when I’m grounded.  I’ve started moving from bemoaning the situation to better managing the time to be fully prepared for an opportunity to fly.

A quick Google search provides the definitions of grounded:

  • a parent refusing to allow a child to go out socially as punishment
  • to prohibit or prevent (a pilot or aircraft) from flying
  • a person who understands what’s important in life

When a parent grounds a child it is the parent’s experience and wisdom guiding them to deter the child’s unwanted or bad behavior.  It is a push for more positive behavior and outcomes.  When a plane is grounded, it is the experience and wisdom of the pilots, air traffic controllers, mechanics, and aviation experts who make the decision to delay the flight.  When a person is described as grounded, it is their experience and wisdom that enables them to focus on what’s important in life.  A person who is grounded can prioritize those investments of time, energy and attention that will yield the most rewarding outcomes.

When I think back on the groundings of my youth with clarity and perspective, I realize that these distraction free periods actually enabled me to be a better student.  Without the distractions of the telephone (landline in my day), parties and other outings, my focus was more intense and there was a palpable difference between being a good student and dedicating time to being a great student.  It helped add a measure of discipline to my young life that I was lacking.

study-books-and-learning

And, as someone who has had my share of hours watching an airport monitor change from a flight delay to a flight cancellation, I’ve got experience being grounded in airports.  Often viewed as a waste of my time, when I again reflect with my hindsight 20/20 vision and a more mature perspective, I realize that my time was better spent focusing on how to be productive and make great use of the time while I was grounded versus focusing on what I was missing.  Just like a mechanic who is called to fix the plane, it can be my opportunity to focus on and make my own repairs and improvements.  The mechanics use this grounded time to put the plane in a better position to have a safe flight at a great altitude.  Maybe being grounded is a sign that I’m not (yet) ready to fly.

For sure, being grounded is a time to think really hard about what’s led me to this place and where I’m trying to go.  At times, it’s definitely meant that I’m burnt out.  Maybe I’ve used too much time, attention and energy on things outside of myself.  Maybe I need some physical or mental rest.  I need to refuel.  Maybe I just need time to stop neglecting my needs and focus on me.  Life’s distractions can find a way of pushing us away from our needs.  We can stop nurturing ourselves in constant haste to get from here to there and back again.

relaxing-woman-at-beach

Finally, by being grounded, I can become more grounded.  Without distractions, with a focus on making better use of my time, with a focus on me, I can prioritize and truly zero in on those things that are important in life, those things that will help me get off the ground when my time is right.

Sometimes, no maturity or perspective can change the fact that being grounded can suck, especially when there seems to be no rhyme or reason why.  We don’t deserve bad things to happen to us.  I’m just learning to change my approach to how I use the time.  When it appears that there are no introspective moments that provide clarity, this may be the clear sign that it is simply just time to rest and recharge.

I’m reconstructing life after breast cancer and these lessons are much clearer to me now.  Each time I’m grounded, I have to be more attune to the chance to make the best use of my time.   The 5 important lessons I’ve learned from being grounded are:

  1. Being grounded provides an opportunity to change a behavior
  2. Being grounded provides an opportunity to focus on making (personal) improvements and working toward excellence
  3. Being grounded provides an opportunity to rest and refuel
  4. Being grounded provides an opportunity to nurture myself
  5. My changes that come from being grounded allow me to live a life that is in step with what’s valuable and important to me

At the very least, I owe it to myself when I’m grounded to be reflective and introspective to determine how to best use and manage my downtime.  During chemo, I couldn’t walk a city block without extreme fatigue.  I needed rest to heal.  Now, post treatment, I’m a distance runner who has completed a half marathon and three 10 mile races.  I hated being laid off, but found it a beautiful time to spend more time at school with my small children.  I was able to attend daytime school events and presentations, sit at school performances without a laptop in tow and a cell phone in my ear, half listening to a work conference call.  And surely one of my prayers when I was diagnosed with breast cancer was having the opportunity to watch my children grow up.  With this gift of time, I was able to do so with far less interruption from the seemingly never ending call of the corporate world.  I was able to move away from the early morning, late afternoon meetings, the stressful deadlines and the unreasonable demands of my corporate grind.  I’ve transitioned to writing, speaking, and coaching; things that I love and that provide such fulfillment and joy that I wouldn’t have been able to do while sitting in my cubicle.

As adults, we are no longer under our parents’ watch and constant care.  But, God and life have a way of redirecting us, grounding us, when we would otherwise be going in the wrong direction.  I didn’t get to the beach last weekend, but got the opportunity to spend some wonderful days with my family and friends that truly fed my soul.  When a business opportunity doesn’t come to fruition (yet), when a financial investment doesn’t show great reward (yet), when a personal opportunity doesn’t yield positive results (yet) and I’m grounded, I have to remember that it may be a sign that I need to rest and then put in more work, more planning, more preparation in order for me to be ready to take flight and soar!

airplane-takeoff

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.