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.