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.

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.

flower-growing-through-cracks

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.

carter-day-1-sixth-grade

kennedy-day-one-4th

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.

In My Lifetime

In my 46 years, I’ve seen many positive changes that I didn’t think I’d see and couldn’t imagine years ago.  I remember my grandmother and other older relatives commenting on advances and progress that they thought they would never see in their lifetimes and now I’m living the same thing.  I hope I live through at least one more.  But, here are a few that I’ve experienced:

  • Typing – I’ve moved from using a typewriter to an electric typewriter to a personal computer to a laptop and now a tablet
  • Telephone – I’ve gone from the big yellow (or green) phone on the kitchen wall to a cordless phone to a wireless phone
  • Computer memory – I’ve gone from saving college papers on a floppy disk to using a USB flash drive to saving my documents in the cloud
  • Listening to music – I used to listen to music on a boombox and then a Walkman and now an iPod
  • Watching movies – I used to watch movies at home on Betamax and videotape and then DVD and now you can watch movies on Blu-ray

In my lifetime, I’ve had the opportunity to live through many changes and advances.  As Vice President Biden leads the Cancer Moonshot Summit today with the goal to “double the rate of progress toward a cure”, I hope that this collaboration and new approach will allow me the privilege of expanding the list of progress and change that I’ve lived through.  I hope that I can say to my children and grandchildren that there used to be the dreadful cancer diagnosis, then there were cancer treatments and therapies and now there’s a cure.  I’m grateful to President Obama and Vice President Biden for their commitment to the Cancer Moonshot’s goal and I hope that I can say that cancer is cured in my lifetime.

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

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.

 

Zora Brown, The World Remembers

Zora Brown, the world misses you.  But, your friends and colleagues have ensured that the world will remember  your warrior spirit and your tireless commitment to breast cancer advocacy and ovarian cancer advocacy.  THANK YOU. Yesterday, we had the honor of celebrating the Dedication of the Zora Brown Mammography Suite at the Capital Breast Care Center.  And, there have been more:

Zora’s Lounge for Patients and Families at Howard University Cancer Center https://www.facebook.com/friendsofzorabrown

C-Change honored Zora’s work with them as a member since their inception. She served on the Board of Directors and Executive Committee. http://c-changepublications.org/2013%20Tribute%20Book/index.html#/8/

AACR honored Zora who was a trustee for the AACR Foundation

http://webcast.aacr.org/console/player/20852?mediaType=podiumVideo&

#ZoraBrown #breastcancer #ovariancancer #pioneer #advocate #BRCA1 #CBCCinDC #AACR #CChangetogether #HUCC #mammogram

ZB Mammography Suite program Mel posting and ZB Suite Mel and Meaux posting at ZB Suite ZB lounge plaques Mel by ZB lounge plaques

 

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

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.