Why Ask Why

Some people ask me why I get political. Some people ask me why I got involved in the American Cancer Society after working as a Director of Corporate Development and then resigning my role after the stress of the position. Some people ask, why, after being a survivor of breast cancer, do I continue having the stress of being involved in either. I say I value life.

Getting the opportunity to work at the American Cancer Society (ACS) post cancer was an eye opening experience. I found myself the only staff member in Nashville that was a cancer survivor at the time.  It was a blessing and a curse to work for a mission after having a bird’s eye view of the devastation it wrecks in one’s life mentally, spiritually and physically. I thought the very least I could do is give back.

Thus, after forming a team for Making Strides for Breast Cancer while in treatment gave me a fresh start on my path to my work with ACS.  I was given the opportunity to be a headliner speaker at their annual Kick-off Breakfast at the Wild Horse Saloon that year in downtown Nashville.  I then made it my mission to not only work diligently for them but to learn all I could about what is being done to combat cancer in America. What I learned is that, next to the Federal government, ACS is the number one agency funding cancer research in our country. 

I discovered that the research that was done on herceptin, the drug that combats HER+ breast cancer, was funded by ACS. This type of cancer affects 20-25% of breast cancer patients. Prior to 2005, there was no known cure for this type of pathology. I had Her2+ so ACS was indirectly responsible for my survival.

During the time I worked at ACS, the Affordable Care Act had not been enacted. This was a time when I saw firsthand the effect of not having access to care for cancer patients. The effects were devastating and stories I heard and experienced first-hand have forever affected my attitudes, passion and compassion. I cannot abandon those that have died and suffered due to this lack of humanity.

I hear the claims of those without insurance are lazy, out of work and undeserving. I read the claims that they are without foresight of the possibility of having cancer and do not plan according. I also have heard voters say it is not their responsibility to pay for the sick that is until they are afflicted with the disease and suddenly struck with the realities of the healthcare system that bankrupts more people, medical bills, than any other cause. I too was hit with cancer prior to changes in the system.

Let me share some of my realities as I have been accused of living in utopia and not in the real world.  I have lived in the real world. Cancer is real. Treatment is hell, and sitting next to folks suffering without insurance is anything but utopia. Getting chemotherapy next to someone with limited insurance vomiting next to you because their coverage doesn’t include nausea medication is not pretty.  Having a younger brother opt out of treatment and going instead for radical surgery to avoid costs of lengthy treatment is very disheartening. Draining  portions of your limited retirement account is not a fantasy or a dream come true for anyone fighting cancer and we certainly were not expecting it to happen to ours. But that was our reality too. Cancer is costly, without insurance, deadly unless you are rich. 

So my involvement in cancer, in many forms, most notably ACS  is paying it forward and also paying it back. It is trying to prevent further tragedies of our country going backwards in terms of legislation.  I do not want anyone to experience what I saw and heard on the phone and in person, treatable cancer patients dying, patients suffering through treatment that could be avoided with the right kind of drugs and half-ass treatment due to limited insurance.  Children losing limbs and then also not getting prosthetics so spending a lifetime in a wheelchair. Or a single mother who had an 18 month old child survive cancer but because of the pre-existing condition was denied healthcare coverage for most of his entire life so had to pay all medical for him out of pocket! 

It is a misnomer that minorities are at higher risk for cancer. In the days when insurance was not as widespread as it is now, many got diagnosed at later stages. This is because they waited to go to the doctor till they were very symptomatic. At the later stages, cancer is harder to treat and more costly. With insurance, cancer is cheaper to treat because people go to doctors and cancer is caught earlier. It is also able to be treated more effectively. If you remove insurance, as it was when I was on the payroll at ACS, the amount of deaths from cancer will quickly rise and the amount of people that will be willing to enter clinical trials will diminish as side effects are not covered by trials but by your primary insurance so you need to be insured.  

My political activism wasn’t a choice in my mind.  During my time at ACS we were all encouraged, somewhat pushed,  to be involved with another branch of ACS called ACS CAN, CAN standing for Cancer Action Network. This organization is a cancer advocacy organization dedicated to making cancer a top national priority in issues, policies and laws in the fight against cancer.  I have been accused of looking at politics through high school eyes because I agree with the attitudes of this organization, which, incidentally are bipartisan.

Is this political or humanity?  Ask someone who has survived cancer, especially someone who knows someone who did not because of a lack of insurance.  Ask a woman who had breast cancer and could not get reconstruction prior to the law requiring insurance companies to cover it how they feel about politics getting involved in healthcare decisions and making mandatory coverage for all on issues like this.

None of us will live forever. None of us, I suppose, wants to. But we all deserve to live with a responsibly decent quality of life.  I live in a 55+ Active Community with 600 homes, most of which are Republicans supporting the GOP healthcare suggested changes. I am political for all of them.  The majority of the neighbors I have met in the past 18 months have pre-existing health conditions. If these conditions are not covered or are covered with exorbitant rates, these neighbors and myself will be lost in the system.  Their votes will backfire. I don’t want that for them, whether they realize it or not I am fighting for them, not against them or anyone else. Accessible affordable healthcare with changes made is a reasonable expectation in America. And since I survived cancer, I must continue fighting for it.

If you value something, you fight for it. I value the breaths I take, the moments in a day. Hence, I fight to live. I believe others have that right too. I am limited in what I can do but I will use my voice in the small capacity I can to make noise to stand up for cancer and issues that affect human lives. To not do so is to be self-absorbed and only care about my life and no one else’s. 

Call me a dreamer, but I’m awake now, no longer flat on my back in treatment. Call me an idealist but we are a rich country with a rich government making decisions for millions of Americans that can’t nearly afford what they can and seemingly having little say over something as significant as affordable healthcare.  There are solutions, there should be options and it should be inclusive not exclusive.  Cancer is greatly impacted by the decisions that are made in this area and this disease is like a domino in how it affects families, schools, communities, workplaces, finances, and the future. So yes, why ask me why?

Blessed are Those Strong in Spirit, Like Melanie Bannister

Chris and Melanie Bannister 

There are some stories you hear that you just know you will never forget and will forever be touched.  Some lives are meant to be that way, a life  that has far reaching impact beyond just the circle of family and friends. Such is the life of someone I just recently learned of, a woman in Allendale, Michigan. 

It starts out pretty normal like anyone else living in anywhere, USA.  Growing up, getting married and having children. But it goes horribly array in so many ways neither she, nor anyone else could have predicted.

I learned of Melanie Bannister from my cousin Connie Brown. Melanie is my cousin’s daughter-in-law’s best friend. She has been in the fight of her life, for the second time. She has been trying to put out fires now for years, her kids, her husband’s and now one out of control waging against her body.  Her loving husband is beside himself wanting her to enjoy a quality of life and yet understanding her need to always choose life, one more day, always wanting that extra moment with her children and her husband and her loved ones and friends. 

Those around her say that she has maintained strength through the adversity and a positive spirit through the storms.  Yes, you could say she inspires. But you could also say she suffers as her treatments make her quite sick. Her story is the reality of breast cancer gone badly, when it comes back with a vengeance and permeates other areas of your body. Metastatic cancer is a harrowing experience and no one deserves this journey, not Melanie, not her husband nor these four children. She is a soldier and for that, she deserves a few moments of our time to hear her story straight from her lips:

  

My name is Melanie Bannister. I would love for our story to be shared. I am wife to Chris Bannister for 17 years and a mother of 4 children. 7 years ago this October I was diagnosed with Stage

2/3 Invasive Lobular Carcinoma. I went through aggressive chemo and radiation, as well as a double mastectomy. I was regular about going to every checkup appointment.  I had a total of 6 PET scans after and I was all clear of the nasty breast cancer.  We thought that would be the last I would ever hear of it for me. 

Almost 6 years later to the day I was diagnosed with Stage IV Invasive Lobular Carcinoma.  I was told the cancer has metastasized to my liver, lungs, uterus, ovaries and bones. This was one year ago. The first step was supposed to be putting my body into menopause and then starting a targeted chemo pill that is specifically for my type of cancer. 

Unfortunately, my body did not respond well to going into menopause and the insurance would not cover the pill unless it did. With the cancer multiplying fast in my liver and bones, my oncologist decided on IV Chemotherapy Ixempra. Due to the neuropathy of side effect of this treatment, we discontinued it in July 2017 and have moved on to Gemzar. For the rest of my life I will be on some form of Chemo to keep me alive. Although the side effects are bad, if this is what I have to do to keep me here for my family it's better than the alternative. 

Due to everything involving our family, my husband Chris has had to take unpaid leave to help care for our children as this process at times has made me very sick and weak. 

Chris also had to go on short term disability due to having a fracture in his neck fusing 2 vertebrae together and be off work for 6 weeks July of 2017.

My children are so important to me and there are challenges with them also. Our oldest daughter Alexis is 22 years old and was born with Cytomegalovirus. She, in turn, has Cerebral Palsy and is severely multiply impaired.  Alexis requires full time care 100% of the time. Her conditions have led to many hospitalizations and surgeries over the years.  When she was only 7 years old, she was left in a coma for a full month and again 2 years ago. At that time, the doctors were not sure if she would pull through it or not. By God’s grace, she did!  Alexis cannot eat by mouth but we will take that because she is here with us.

Our daughter Kyleigh is 17 and was diagnosed with a rare blood disorder, Acute Intermittent Porphyria when she was only 7 years old. My husband Chris also has this rare blood disorder.  Stress is a huge trigger for this disorder and can have either of them down for days at a time requiring hospitalization at times T

Our son Noah was born with Ocular Albinism, a rare genetic disorder of the eyes and is legally blind.

Our youngest is Caleb, 9 years old, healthy but way too young to understand or remember what mommy went through before or perhaps to grasp all of this in our family. This is very new for him this time around. Caleb still has his good and bad days of worrying about me.

This will be a long uphill climb for our beautiful family. But, we can do this together because I know God has our best intentions at hand. This is our normal. God has blessed us because He knows we are strong and together we can get through anything.

We are truly blessed. Yes there are times where I ask why?  Why me?  Why us? What did we do wrong?  But I know that it's nothing we did wrong. It's because we are blessed and we are strong!!!

There is much to be learned from this young woman's story. Could you endure this kind of hardship and be strong in spirit, love and faith?  With all this adversity, she still stands as a beacon of hope for all those around her as she fights for every single day she can be alive, just for one more moment to spend with her husband and children.  This woman and this family has many many needs. I pray more people hear her story and decide to help. If you are touched by Melanie, please share her story. Her GoFundMe page is for a family that can use the support and is worthy of all of our contributions. Bless all of you for reading this and most of all, Melanie and her wonderful family!  Click here to show your support for this brave woman!

Healthy Kids

One of the reasons I care so much about what is going on politically in regards to healthcare in this country is the impact it has on children. Poor in America have enough trouble feeding their children. If they can’t afford to live they can’t afford healthcare. Without adequate healthcare, they are more likely to have a need for medical care and it needs to be affordable.

There are over 45.7 Million Americans living in poverty.  Can you  imagine a family of four living on $23, 550 and having to obtain medical insurance on a competitive market? An individual in poverty makes a max of $11, 490 annually and if put on a high risk pool would have to pay more in premiums for healthcare. I ask you how, on what? This might be a single father. This is a reality for 13.5% of Americans.

Let’s assume economists are wrong and that no recession is going to happen in the next several years so things won’t get worse for those at poverty level. Let’s assume that no one else loses a job and falls into the poverty level and some come out of it.  We are still talking about 13.5 % of our country’s population.  Currently Medicaid (for those at poverty level and children) combined with CHIP (special insurance program only children are eligible that have parents that make slightly too much for Medicaid and it is administered by State government) have nearly 70 million people on these plans, 1 in 5 people in our country!

Keeping that number in mind, is it any wonder protestors are shouting in the street that a Medical Care Plan in existence can’t be pulled out without being replaced immediately for the poor in society?  Children that are sick deserve treatment. This is not an uncivilized country that we live in that should be calling on the United Nations or Mission Trips from foreign counties to help sick children needing medical attention. There is enough money in America to care for medical care for youth and their care-takers/parents.

What psychological effect does it have on children to see their parents ill and not getting help?  Having a chronic illness is grueling. Not being able to get treated for it is worse. That is a stress on an entire family but on a child, to try to process it is very hard. These children have a hard enough life living in poverty. Our nation should have some sort of obligation to its youth. They deserve at least medical care and a parent that loves them to be around and support them. There are not enough parents to go around to foster these children.

If the issue isn’t addressed, know that there are currently 400,000 children in the foster care system in the United States. It is not without its problems finding good homes to foster children. 100,000 of these children are looking for adoptive homes. Thus, the children whose parents need medical insurance, if it is cut and they can’t afford it, Republicans must feel their life has no value. There lies a greater question, are Republicans putting these children in poverty homes into a foster care home?

The foster care system is already well over a $22 Billion dollar program of tax payers money. Even with continued reforms, children that have been placed in this system suffer at least one form of abuse. Many experts say the system is beyond hope and needs to be completely abolished. I was shocked to learn 74% of inmates have been in the foster care system and 80% of all prisoners on death row have been in this system as well!

As a nation with so many youth in poverty-stricken homes, until that changes, knowing health is a major factor in all areas of life, politicians must make healthcare affordable for the least of our brothers and sisters. I am not saying which system is best, which plan, I simply know penalzing those that are chronically ill isn’t the answer. They already are spending money continually on medication. Their life is already lived at half-mast. Why would our government want to knock them down more?  Certainly there are other ways to save money besides making children lose their live, their parents or their grandparents prematurely?  Even middle-income Americans struggle with insurance premiums and drug costs. How in the world can a unwed mother on a minimum wage afford increases on Medical family policies?

We must, as a nation, recognize we have fought wars side by side against enemies. We have waved our flag to stand united during war times and joyful celebrations. To turn our back on neighbors that are fellow Americans simply because they don’t make as much money is not only un-American but cruel. Simply because their lot in life is less does not mean their life has less value in God’s eyes. Certainly we can band together and support that medical advances are for everyone’s benefit, most especially for children. They deserve to have their parents healthy and their lives free from disease. 

We are the world, yes we all are the children.