I am angry. I am hurt. I am worried.

I have stayed out of politics through the entire tumultuous 2016. I have serious issues with many politicians. I am not here to talk about them directly. I am here to talk about an issue that transcends political party affiliation. I will not engage in a debate about Democrats or Republicans, or the should have/ would have/ could have game that people like to play with each other.

This is far more serious, and more important than any of that. This is about my daughter. It is about her life. Her future. And, it is about the lives of millions of American citizens, myself included.

I will concede that there are problems with health care in America. I will even agree that healthcare the way it exists today needs change. However, when I look at a situation that needs change, I think it through carefully. I work through every detail. I weigh out repercussions and ramifications.

The Bill that passed the House today, in my opinion was put together in an attempt to score a “win” for our President.

When millions lose. No one wins. That’s not just the math teacher in me. That’s real.

Three years ago I was in a car accident. It was a terrible situation, and I was T-boned at an intersection. I will contend to my dying day that the truck that barreled through me was speeding so fast it never should have made it to me before I cleared the intersection. I had the stop. I stopped. He never saw me and it took almost a block, in a school zone, for his truck to finally stop moving. Because the stop sign was mine, I was assessed with most of the fault for the accident. It made me furious. I was told speeding could not be “proven” despite the absence of skid marks. The other 6 accidents that happened at that intersection in the months preceding were not helpful either. In the end, I was grateful for my life. I walked away and took the penalty on my insurance. I paid that accident penalty for three years. And, while it did not make me happy, I did it. The accident penalty was annoying, but affordable, less than $200 a year.

The car accident happened once. It might happen again, but it will not happen regularly. I am 25 years driving, with one accident and no moving violations. I have proven I am not a reckless driver. I have control over that. Full control, and I take my driving very seriously.

I also take health very seriously. Unfortunately, there are aspects of my health I do not have full control over. My daughter and I have a rare genetic disorder called Cowden’s Syndrome. She is 30 years my junior, and at 13 and 43 we have seen the inside of an operating room close to 45 times combined. Cowden’s syndrome causes tumor growth. It carries with it an astronomically high risk of many cancers, most notable breast, thyroid and uterus. It carries also significantly elevated risks of kidney, colon, skin, and other cancers. Many of our tumors are benign. Some are not. The only route we have to long term SURVIVAL is constant surveillance.

Many doctors recommend surgery to remove things that are high risk. Thankfully, that suggestion proved life-saving for me in 2012 when a “prophylactic” bilateral mastectomy revealed stage 1 breast cancer. I was fortunate.

Two months ago I had surgery to remove a benign tumor from my vocal cords. It was impairing my ability to breathe and speak.

In 16 days my daughter will undergo the 18th surgery in her young life – the 7th on her right knee. Cowden’s Syndrome carries a high correlation to vascular malformations like the Arteriovenous Malformation (AVM) that grew in that knee. After 6 embolizations to curtail the blood flow, she now deals with the repercussions of having blood lingering in the knee. There is wearing away of tissue causing the patella to shift. There is extreme pain, not just in the knee, but all through her body. Her right foot stopped growing years ago, but the left one kept at it. Now a full size apart, different in length and width, her 5’8″ frame feels the repercussions with every step. She is regularly at the chiropractor in attempts to minimize pain medication and keep her in alignment. Pain medication caused such GI distress in 2014 that she spent a week in the hospital. Cellular changes in the esophagus are not good in anyone. At 10, with a condition that causes tumor growth, it was certainly another wake up call. We gladly purchase 2 entirely different shoes every time she needs a new pair. We are grateful she walks.

That is just the tip of what this child has endured in under 14 years on this earth. She has had her thyroid removed with 19 nodules and suspicion of malignancy at the age of 10. We still work to balance levels synthetically. She had had TWO D&C procedures to eradicate suspicious tissue in her uterus. She has had a lipoma removed from her back and vascular malformations from each palm. She has lost her gall bladder. She fights, stands up. Moves forward, and gets smacked in the face again.

Soon after our diagnoses in 2011, another mom told me Cowden’s Syndrome requires vigilance. I got it. I am on it. All the time. And with the GRACE of God alone, we are walking the path the best way we can.

We average between 6 and 10 appointments a month between us. The copays and travel costs are often daunting. But, we are fortunate. We have two good jobs my husband and I tell ourselves. We have good insurance.

We are careful with every morsel of food that enters her body. We eat largely organic and non-GMO to let her body use all its energy to stay healthy instead of fighting contaminants. Even at that she is acutely sensitive to almost all gluten, dairy and soy.

We treat as naturally as we can, often incurring bills, as these treatments are rarely covered. Yet, still we prioritize health because we realize its value. And we remember how fortunate we are. We have good insurance. We have two good jobs.

My daughter is awesome. And, not just because she is my daughter. She is a respectful, kind-hearted young lady. She has the voice of an angel. She acts in the plays at school. She reads for fun. She swims passionately. She is an honor student. She talks about her future, and what she will do with her life. I have no doubt she has the capability to make a real difference in this world, regardless of her career path. Today however, I am left to wonder. Will any job ever be enough?

If the AHCA passes the Senate, we will likely be placed in an unregulated “high-risk pool.” This is not like my car accident. This is not a minor inconvenience. This has the potential to decide the course she will have to take with her adult life, as her health issues will not go away. We have this genetic mutation with all its risks and ramifications for life. Lifetime caps, potentially re-instituted will likely be met in her 20s, if not before.

There is no way at all to prove where the mutation came from. I’d ask you to indulge in a theory with me a moment. My father, a Vietnam Veteran was heavily exposed to Agent Orange as a Marine in 1967-1968. My mutation was traced to my father. He never manifested with Cowden’s Syndrome, but somehow passed that mutation on to me. Wouldn’t it be ironic, if that toxic exposure in the jungles of Vietnam, in an attempt to fight for his country, ultimately led to this condition in his daughter and granddaughter? Dad died in 2013, pancreatic cancer that may or may not have been Agent Orange related. I’m glad he is not here to see the reality that our government may be on the cusp of turning it’s back on his family.

I was raised a proud American. In addition to my Dad, I have three Grandfathers who were World War II Veterans. I value the principles this country was founded on. I am grateful for the freedoms I have in this country.

I have not been raised to use the phrase, “that’s not fair,” but I will ask you to consider a few things.

Last night as I watched the news my head spun as I heard elected officials allege that people with pre-existing conditions have not led good lives. I am not here to compare, but I will tell you our “pre-existing” condition has NOTHING to do with lifestyle choices. And if you do not like the site this link came from – scroll to the video. Hear it from his mouth.

http://www.politicususa.com/2017/05/01/gop-congressman-people-pre-existing-conditions-bad-people-pay.html

I can name dozens of people off the top of my head, as close as within my own family, that would be grossly negatively affected by the establishment of “high risk” pools.

Should a cancer survivor, an MS patient, a diabetic, a person with a brain tumor, a rare heart condition, a genetic mutation, or countless other conditions be forced to make decision on the path their life should take because they are too expensive? Are they less valuable? Do they matter less?

Should we be asked to decide whether or not to keep critical screening appointments, or have access to necessary medication blocked by cost?

We have two good jobs, and this whole thing terrifies me. But, I will not be controlled by that terror.

This post will reach my Senators today. Social media can be used for good. I have a voice. I will not be quiet about this.

Tell your story. And if you can’t find your own words, share mine. Let our Senators know that we are real. We are not numbers. We are not a cost-cutting measure. We have faces, and names. We matter. We all matter.

We are determined to remain

#beatingcowdens

There is a small sign on the first floor of the Veteran’s Hospital in Brooklyn, NY that expresses this sentiment.

It is small enough that I missed it the first week my Dad, a Vietnam Veteran was in the ICU for what they initially suspected to be liver failure.

But I noticed it last week. Dad died on December 4th after a short, yet powerful battle with pancreatic cancer.

The Price of Freedom, of our freedom, the basic ones that we are all guilty of taking for granted at some point – is visible at that VA Hospital. It is visible on the faces of the soldiers as they trek the halls, their journeys each through the battlefields of their own personal wars.

I have been away from my blog for a long time, and as I sit to write in the middle of the night, I can feel the tension finally beginning to lift from my neck. Writing is my therapy and its cheaper and easier than the wait and the copay at any doctor’s office.

Dad didn’t have Cowden’s Syndrome. Or at least we don’t think he did. As a matter of fact, prior to his death, with the exception of one procedure – he was never really sick a day in his life. When we would go to his appointments together, nurses would repeat in disbelief, “You don’t take ANY medicine?” And he didn’t. Not even a Tylenol.

Which is one of the things that has been bothering me so much.

I have held in my thoughts on this out of respect for Dad and his privacy – but since he encouraged my writing I am fairly sure he wouldn’t mind if I shared just a bit.

Dad saw active combat in the USMC during the late 1960s in Vietnam. And besides the typical tortures of war, Dad was exposed to Agent Orange.

Now his body was seemingly unaffected from the toxins, but we theorized on more than one occasion that perhaps that toxic exposure triggered my own gene mutation into Cowden’s Syndrome. Of course no one will ever know. And even as I wonder if his cancer was a result of his own toxic exposure, I know I will never be quite sure. His Dad, my Grandpa, died of pancreatic cancer in 1993.

But pancreatic cancer IS a genetic disease. And even though in 90% of the cases, the genes spontaneously mutate, there are 10% where the genes are passed within families. I don’t know the exact genes responsible, although I will in the coming months, as the genetic counselor where Dad was diagnosed will be contacting my siblings and I for testing.

More genetic testing? It’s a thought too overwhelming to process right now. That will come with time I guess.

I can’t help but wonder when there is too much knowledge. I know that sounds foolish, coming from someone whose life was saved by the early warnings afforded to me after my Cowden’s diagnosis. However, there is a point, a fine line, where you start to wonder when too much knowledge becomes a bad thing.

Tonight my thoughts are all over the map. Tonight I prepare mentally for the wake and funeral over the next few days. Tonight, I think about my Dad – the man.

Dad enlisted in the United States Marine Corps right out of high school. He saw 13 months of active combat before returning to marry his high school sweetheart, my mom. But, as young relationships so often go, this one ended a few years later.

Dad spent years trying to get settled in his heart after the trauma he experienced in the war. He married again, and had a son, my brother. But that marriage was not to be either.

Dad seemed to have a need to move like the wind for a lot of years, and our relationship through college was pretty distant. Then in 1999, a year before my wedding, we began to reconnect, and our relationship had become closer each passing year.

Dad was not a saint. But he was a good man with a good heart. He was strong in mind, body and spirit. Dad did the best he could with what he had where he was – always.

I spent lots of time working to understand the trauma that follows Veterans home. Because of that I will always respect my father and the ways he tried his best.

But if I am honest, I am angry. Really angry. Not at my Dad, but at the cancer that snatched him from me just as we were coming closer and closer together. The damned cancer that cut short a relationship just starting to bloom. We had plans. We were going to see the cherry blossoms in DC in the spring. We still had things to do.

Instead I am left with another ribbon to add to the collection. One none of us ever wanted to own.

Dad often spoke about life being a puzzle, and each of us having a piece to contribute. From our perspective its hard to see where we fit, and how our piece changes the landscape. But, when our job is finished, our piece is placed into the puzzle – the greater puzzle – the one with no definitive number of pieces. While this happens, our surrounding pieces are created. The puzzle grows, visible in its entirety only to our the Creator.

As Dad’s piece was being placed into that puzzle, I was being reconnected with my brother, and bonding with my sister. We learned to work together, to embrace our gifts, and our differences as strengths. As a unit we were an unstoppable force getting our father anything he needed during these last difficult weeks, and I am so proud to be part of that “team.”

My father’s inner strength defies description, as he journeyed through his last days focused on a few key things he was compelled to accomplish. Almost impossible to eat comfortably, Dad carefully conserved his energy and skillfully kept his body functional until he was able to receive his definitive diagnosis. A diagnosis I am certain he fought for so that his children would have the ability for advance screening.

Dad was admitted to the VA Hospital on Thanksgiving Day, and lived for a week, as a parade of family and friends got to spent time by his side.

I walked the halls of that hospital quite a bit last week, reading prints of the NYC Vietnam Memorial such as these, as my already deep respect for our country’s veterans grew.

We laughed, and cried, and told stories, and played music. We held Dad’s hands in the moments before he went to meet the angels. We were gifted with time to say goodbye.

My tears are not for my father. He is finally free. He paid the price for our freedom for all of his adult life. Now he is at peace.

My tears are because I want more time. My tears are selfish. But I guess I good sign that you really love someone is when you can’t seem to bring yourself to say goodbye.

There will be time for thinking and reflecting on Dad, his life, his death, genetics, and long-term ramifications.

But for now, I have to get some rest. Three days ahead to celebrate the life of my favorite Marine.

Semper Fi, Daddy. I love you.