AHCA, High Risk Pools, and My Child’s Future

Published on May 4, 2017May 4, 2017 by beatingcowdens2 Comments

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

STUPID CANCER show!

Published on October 21, 2013 by beatingcowdens3 Comments

I am absolutely high on adrenaline right now…

In August the husband of a friend from High School asked me to be on “The Stupid Cancer Show.”

https://www.facebook.com/stupidcancer

I said yes, not quite sure exactly what would be involved, but knowing that it was a rare opportunity to speak to Cowden’s Syndrome awareness.

Tonight was the night.

What an amazing show. I am so glad to be familiar with it now, and you should check it out!

Somehow the words came pouring out. It’s amazing what speaking from the heart can do. I can only hope that someone tonight knows what they didn’t know before.

I find there to be no coincidences in life.

After my segment in the “Survivor Spotlight,” the show focused on toxicity and cancer. Well even though I just listened in to THAT part of the show, I was so in tune to what they were saying.

http://www.blogtalkradio.com/stupidcancershow/2013/10/22/stupid-environment

(My part of the show starts at about 11 minutes, and ends around 30 – I talk too much! But I managed to mention my friends at Life with Cowden’s, PTEN world, and The Global Genes Project!)

Near as I can figure these days, breathing increases your cancer risk. But, taking crappy care of your body, eating junky food, and generally being careless, puts you at a greater risk than if you are careful.

There is nothing we can do, especially those of us with genetic predispositions to cancer, to fully protect us. But we can do what we can to help.

There is no guarantee I won’t get hit by a car, but if I stand in the middle of the street I greatly increase my chances.

People ask why we devote so much of our time, energy and budget into healthy food.

Genetics are not on our side. But we can fill our bodies with healthy, pure, organic superfood.

These days the core of the nutrition in our home comes from Isagenix. It does not claim to prevent, treat or cure any disease, but If you haven’t looked yet – now is a good time.

This company provides quality food, and they make it possible for you to afford it, because you can eat your Isagenix for free.

“You plus two, them plus two.”

Well worth my initial investment. Quality nutrition for my entire family.

We are certainly going to do the best we can at all times.

Our health, no guarantee. But we are going to do the best we can to keep that “STUPID CANCER” away.

Catch-22

Published on October 10, 2013 by beatingcowdens1 Comment

A catch-22 is a paradoxical situation from which an individual cannot escape because of contradictory rules.^[1]^[2] Catch-22s often result from rules, regulations, or procedures that an individual is subject to but has no control over.

-Wikipedia

You know a person could go crazy trying to keep themselves free from toxins. These days it seems to be an all consuming, and virtually impossible task. Sometimes I wish I knew a lot less. Sometimes maybe ignorance is bliss. And cheaper. And a LOT less stressful.

But then again, I think my girl would be a whole lot worse off. And therein lies the “Catch-22.”

Meghan has been seen by a “biomedical specialist,” (insert voodoo, witchcraft, flawed medicine – whatever makes you happy) since she was about 2.

Back in the summer of 2005 things were definitely NOT ok here. I knew it deep down where that Mommy gut nags at you. We had speech therapy. We had occupational therapy. And we had a child who had already been hospitalized twice with chronic viral infections, was not sleeping, was not playing, was not talking, and was most of the time flat out uncomfortable. We also had a vast array of doctors who dutifully collected my Co-Pays and did absolutely nothing but tell me they “didn’t know.”

So, I read. I researched. I altered her diet. I added some key supplements. I started to see results – but not enough.

This doctor, whose office we just left a few hours ago – over 8 years since our initial meeting- got to know Meghan. He told us he could help. And he has.

We have worked together through dietary interventions. Supplements. IV treatments. Countless blood tests. And, when we needed it – Xrays, and guidance towards the diagnosis of “milk of calcium” of the gall bladder at age 3.5

He has been my sounding board through lots of ups and downs. I have never, and will never take any one person’s word on what I should do for my daughter – doctor or not – but he is one of the opinions I value highly.

He had the gumption to prescribe digestive enzymes after YEARS of horrendous stool and horrific stomach aches. “We don’t need to biopsy the pancreas. Sometimes we just need to use our heads to see what works.” Not too often these days will you find any medical professional with that confidence or drive to do what is right.

Through the years we have visited his office at least 3 times a year for lengthy consultations. He has suggested countless things to help aid Meghan’s immune system, her pain, her tendency towards chronic fatigue. I have listened to many, and ignored a few. Conversations have evolved over the years as we have each stayed up to date on current research.

The initial diagnosis of Cowden’s Syndrome seemed to bother him a great deal. He was bothered by the ramifications of the syndrome, but also by the fact that there was no way this was “all of it.” Meghan “doesn’t fit in a box,” he would always tell me. Never let them try to put her in one.

And, perhaps truer words have not been spoken. As we have navigated the world of Cowden’s Syndrome, I have been acutely aware that there is still “something else.” But, since we are yet to put our finger on it – we continue doing the best we can.

Cowden’s Syndrome involves screening tests. Regularly. For cancer, and vascular malformations that can form anywhere at any time. X-Rays and CT scans are discouraged because of radiation exposure and a fear that cells can be “tripped.” So MRI is the test of choice. MRI with contrast that is. Gadolinium to be exact.

I’ll get back to why that is important in a bit.

We have spent the last 2 years especially, (but really the last 5 or so for Meghan considering the AVM in her knee was discovered LONG before the Cowden’s Syndrome diagnosis) being scanned. In July Meghan had an MRI ordeal that involved 4,000 images, 3 hours, 2 tubes, and 3 doses of contrast dye.

We have spent the last few years dealing with a rapidly growing child whose pains seemed to be increasing exponentially. We have gone from treating with Advil to treating with 200 mg a day of Celebrex.

We have spent the last few years trying to help her stay calm- only to watch her anxiety mount. In September she was diagnosed with Alopecia Areata– an autoimmune condition that causes hair loss. Fortunately for us it seems to be contained to a small area, but it is an unnerving diagnosis still the same.

We understand the role of autoimmune disease and stress, and toxins. We understand the role that stress can play on a genetic mutation of the PTEN (tumor suppressor) gene. We understand that there is external and internal stress.

We do what we can to control stress on the body. We make sure she has “down time.” We try to help her get rest. We got her involved in swimming, a sport she loves. We make sure she eats a largely organic diet free of the foods she can not tolerate like gluten, dairy and soy. We eliminated almost without exception preservatives and dyes. We bought new pots and threw out the plastic plates we used to use sometimes.

We started giving her ISAGENIX, the organic superfood that is as pure as I seem to be able to find.

And even at that – there is an awareness that we can NOT control it all. There is an awareness that by whatever mechanism that is broken, our girl does NOT detoxify properly. We are aware of toxins in the air, in our soil, and even in our filtered water. We are aware that her body is confused by this world we live in, by the GMOs that are even hidden in her organic diet.

We run, like Indiana Jones, out in front of the boulder, in constant motion. One stride ahead…

Chelation

Chelation therapy is a proven treatment for lead poisoning and poisoning from other heavy metals.

http://www.cancer.org/treatment/treatmentsandsideeffects/complementaryandalternativemedicine/pharmacologicalandbiologicaltreatment/chelation-therapy

The term has been spoken over and over again by the “bio medical doctor.” Chelation is the concept I found every single excuse to overlook and ignore. The idea shook me to my core.

The turning point – Alopecia Areata and the words I had heard him say to me for years, “She is primed to become an autoimmune train wreck. Let’s try to clean her out.”

She went for her first treatment last month. After the treatment there is an 8 hour urine test to measure the toxic metals excreted.

She went for her second treatment today and I got to look at the printout of last month’s urine analysis. So, even as I held her, and she wailed in pain, and two veins rolled before they got a good one, my resolve was strong.

There are several metals that were high. None of that made me happy. But the most disconcerting of all…

The reference range for that MRI contrast dye Gadolinium I mentioned earlier is <0.4. Her output was 190. No I am not forgetting a decimal.

Gadolinium. Necessary for the cancer and vascular screenings set to be part of her life forever. Except apparently her body can’t seem to excrete it.

Catch-22

Keep Swimming…

No more “Toxic” environments

Published on April 7, 2013April 7, 2013 by beatingcowdens2 Comments

Almost a year ago – in June of 2012 – my husband was introduced to Isagenix, a nutritional program designed to help him shed some unwanted pounds and help him feel better.

You see it had only been a few months since his wife and daughter were diagnosed with Cowden’s Syndrome. Meghan had had knee surgery (her 4th) in February of 2012. I had my mastectomy, with the subsequent DCIS diagnosis, in March, and a hysterectomy in May. By June the stress eating was evident as he just didn’t feel well. We all needed his energy level to stay high. There was certainly no time for our anchor in the storm to get sick or run down.

So, with the guidance of a friend – an Isagenix consumer and “pro” herself, we got him started on a 30 day program designed to help cleanse his body of unwanted toxins. The thirty day program was a breeze for him. He is one of the most determined people I know when he puts his mind to it. It wasn’t long into those 30 days when he started finishing the extra vegetables at dinner, and choosing water over soda. He just FELT better.

The information below is from the Isagenix website.

http://www.isagenix.com/us/en/cleanse_overview.html

Nutritional Cleansing unlocks the miracle of the human body

Nutritional Cleansing increases the health benefits you’ll receive from the ancient health practice of cleansing. The herbs, vitamins and minerals that aid cleansing do two things:

Accelerate the removal of impurities from the body.
Nourish the body with vital nutrients to rapidly revive health.

A cleansed and revitalized body is stronger, resists illness better, is more efficient and performs at a higher level than one that is filled with impurities. Many people notice an ability to reach and maintain their ideal weight.

So when the thirty days were up, he chose to continue on a maintenance program. He uses the Isagenix for one or two meals a day, and snacks. It fits in with the “on the go” lifestyle of a NYC employee.

And, as he sees fit – he opts to do a “cleanse day” where he drinks a power packed vitamin supplement and lots of water. He eats very little food. And he always feels better when he is done. He knows now that toxins build up in the body, and he knows when its time to let them go.

10 months later he is down a solid 35 pounds and countless inches. No fluctuation greater than about 3 pounds. It is gone for good. The future is wide open, because as soon as his schooling is over – the exercising will begin again, and the remaining 15 pounds he looks to lose I am confident will melt away.

So how does all this have anything to do with “Beating Cowden’s?”

Here’s how I see it.

I haven’t used the Isagenix program, because I have not had a need to lose weight. But, I have learned so much from reading and watching.

Essential to the program is the release of toxins.

This, I know a lot about from being Meghan’s mom. From a young age it was evident toxins were difficult for her body to process. She seemed to hold onto things, food dyes, additives, “extras” in everything she ate. Nothing seemed to agree with her. An almost exclusively organic diet became essential.

We used Epsom Salt baths in the younger years to help clean out what her body couldn’t get rid of.

I learned about biochemisty, and methylation. I learned about Vitamin B12 and its ability to help her get rid of toxins.

So, over the last few weeks and months, when Meghan’s pain level has gotten progressively higher again, it was time for me to reevaluate.

Looking closely at her diet, there wasn’t much to clean up.

I have Dr. Elice looking closely at her blood. 28 vials this week!

But, it occurred to me that stress – life experiences – could be equally toxic. So I started to wonder if the stressful situations in our life were causing a decline in Meghan’s overall health.