Category Archives: cancer

Behind the healthcare debate

All Children’s Hospital in St. Petersburg, Florida

Long last, the decision everyone was waiting for. The Supreme Court voted 5 – 4 on Thursday to uphold President Obama’s healthcare law, the Affordable Healthcare Act (ACA).

Since ACA was signed into law by President Obama on March 23, 2010, quite a few very important parts have already gone into effect.

• Providing small business health insurance Tax Credit

• Relief for millions of seniors in the Medicare Prescription Drug “Donut Hole”

• Providing access to insurance for uninsured Americans w/ pre-existing conditions

• Extended coverage for young adults to stay on parent’s plan till age 26

• Providing free preventative care

• Eliminating lifetime limits

• Prohibiting denying coverage of children based on pre-existing conditions

• Prescription drug discounts

• Free preventive care for seniors

Much of this has been overshadowed and misunderstood due to continuous debates and the ongoing effort to repeal the entire Affordable Care Act better known as, “Obamacare”.

The Republican Campaign in 2010 focused greatly on a total repeal, signing pledges and stating their mission if elected would be this repeal and making sure Obama was a one term President.

As they campaigned, it wasn’t about what they could do to improve our nation, their states or what jobs they would actually focus on once they were seated in Washington. Their focus was on what they could undo and how they could use tactics to somehow tarnish Obama’s first term in office to hopefully make it his only term in office.

The way this Congress has been operating is exactly the way the 2010 candidates presented themselves during their campaigns. They ran on misinformation, desperation and what became a popular and easy idea because of them, REPEAL!

What did the American people get? Voter’s remorse maybe? But, a large number of Americans are also getting insurance benefits they did not have and that is due to the Affordable Care Act these same Republicans have and are still trying to in some way repeal.

As the Supreme Court’s decision came in, it was clear there would be statements from both sides. This debate has gone on for this long and is a topic that not only has an effect on the lives of so many Americans but has also caused such an ongoing divide amongst a large number of individuals as well. The idea of that should be troubling but it seems to be feeding an ongoing debate that often times the media is playing into.

The divisions are often based on misunderstandings of the law or due to social and economical differences. These differences are not new and often come up in other issues as well. The idea is to bridge gaps not feed into the source causing them.

The first need is to understand what the Affordable Care Act is and what it is not. Stay informed.

The second thing is to not only consider the needs of the American people now but also in the future. Understand that things happen in life that people could never plan on.

Example: One day, without notice a person can suffer a massive heart attack, have a stroke or be diagnosed with Parkinson’s Disease, cancer or come down chronically ill with something that makes them unable to work, continue day to day activity or even be given the news they are facing death. Most people do not want to think this can happen to them and certainly one would hope this doesn’t happen to anyone.

When something like this occurs however, life takes a dramatic turn. Suddenly the focus is on the illness, treatments, doctor and hospital visits and most everything else is on the back burner. This is a time of extreme uncertainty.

This situation happens all across America, everyday. This affects working families, single income families with or without insurance, every economic level, any race, any religion and at any time.

Things that should not be happening are insurance companies taking advantage of people getting sick by denying treatments and/or medications ordered by the doctor, hiking up rates on patients because they are receiving treatment and/or setting annual or lifetime dollar limits on a patient’s coverage.

These tactics make medical cost for insured patients unaffordable. They also shouldn’t be able to deny someone coverage because they happened to survive their heart attack, stroke, cancer or are living with asthma, diabetes or other illnesses they consider to be “pre-existing”.

Everyone should agree to this. That is simple.

Healthcare is a must for everyone. It shouldn’t depend on your age, your economic status or whether you are coming down sick or in really serious condition. A person is more likely to stay behind their health with health insurance than without. Chronic conditions need to be managed or they can become life-threatening. Many viruses could be better managed if more people received flu shots and many conditions like high blood pressure and high cholesterol could be kept under control before more serious conditions arose due to either a person not knowing about the condition or the lack of available treatment.

Overall, people do not like getting sick, enjoy feeling better even if they may dislike or are nervous to visit a doctor.

Soon after the Supreme Court’s decision, Mitt Romney made a statement. Part of his statement was this. “If we want to get rid of Obamacare, we’re going to have to replace President Obama. My mission is to make sure we do exactly that. That we return to the American people the privilege they’ve always had to live their lives in the way they feel most appropriate. Where we don’t pass on to coming generations massive deficits and debt, where we don’t have a setting where jobs are lost.”

The problem with that statement is a great number of people are not able to live the way they feel “appropriate” or even acceptable. Many people have to decide between getting prescriptions filled or to putting gas in the car, paying utility bills or buying groceries. A large number of families have lost homes due to medical bills or living expenses while overseeing a loved one’s medical care. Others skip going to the doctor at all together because often times they can’t afford the visit, are without insurance coverage, or the deductibles have become so large due to adjustments made trying to bring the monthly premium down.

On the idea of passing down “deficit and debts, plenty of Americans have taken out multiple mortgages on homes to pay for medical cost and/or cover expenses for time out of work during medical treatments for themselves or their loved one. That is a huge financial crisis for a family and a burden that will pass along to their children most likely.

Often times it is said that to know what someone else is going through, you’d have to walk a mile in their shoes. It shouldn’t take a mile or a “pair of shoes”. This isn’t about Republicans or Democrats, winners or losers and it isn’t about the rich or the poor or the ones in the middle.

This is about all Americans and humanity.

It is also about looking ahead and being prepared.

A person or a family should not have to go broke to take care of medical expenses.

More sadly, a family shouldn’t have to lose a home while going through the loss of a loved one.

Anyone should be able to take their child to the doctor and receive quality care when they are ill.

Everyone should be able to receive quality care for chronic illnesses and not worry they may be dropped from their insurance company because they are sick.

When a family or anyone is facing a tragedy, our Country should have in place a system that shows we are a Nation with high quality care and we value each Citizen as well as our morals, unity and integrity. It should be a standard we set and a statement we are proud to stand by. It shouldn’t be an issue fought over in Washington but instead a value protected year after year.

After all, looking after the American people is their job and our future.


Life’s Lessons:Cancer, theBridge, and Walmart

Are you at a place in your life where you are thinking about a change in career? Are looking for a complete change in the direction your life is going? Maybe even in a change in your relationship? Do you feel like you are trying to go forward but something doesn’t feel right about the direction you are going? Maybe you feel you are surrounded by the wrong people or too many people or you want to make more friends? I know sometimes that can be called a “Mid-Life Crisis” but what if you are 20, 30 or 60? What is it then? Some people even say they just have this sense that something is about to go wrong, “Doomed”. Is that possible?

I like to think of myself as the “Glass is half full” kind of person but I am also a very realistic kind of person. When I am looking into a situation that has come to me, I look ahead. Although I am given a set of information, I don’t let that information get to me whether it is good or bad. I think information is golden and the lack of information can be harmful. But I do understand that sense of “doom” or pessimism people have. I understand the sense of people getting “off track” and the feeling they just can’t get back on track. I understand having a bad day that has dragged out for a month, 2 months, longer…

It’s possible this didn’t creep up on you over time. Sometimes things happen in our life that brings this knocking on our door. I was introduced to the world of cancer back in 2002 (to be exact April 15, 2002 – you never forget the day) when my youngest daughter was diagnosed with leukemia AML). For one, the diagnosis of cancer changes your life forever. When one of your children is diagnosed, your world comes to a screaming halt! As a parent, the day your first baby is laid in your arms, your life is all about making their world a wonderful and safe place. Cancer doesn’t fulfill that purpose. In fact, it does quite the opposite and in the harshest of ways! It kills! Who it doesn’t kill, it puts through horrible treatments with poisons and pain and often leaves its patients with many side effects and the uncertainty even having an ongoing life or a quality life. In the back of your mind, there is always the thought of the cancer returning. Due to this, life takes a new direction, completely against your will.

While fighting for our daughter’s life, we have seen many children and adults taken away from their loved ones during their fight with cancer. These families are left to start another life without their loved one to hold, laugh with, love and just be able to continue each day with. I can’t even begin to imagine life without my daughter so I can’t say how this feels. These families’ lives are literally torn away from them and they are forced to build a new way of starting their days, going through their days and finding some sort of peace to go to sleep at night. I know from dealing with these families that this takes different lengths of time for each individual in a family and more than often, this hasn’t been attainable for some. I ask myself, “How can it be?” “What would I do?” I don’t even want to imagine that and I don’t. I just know that the words, “Katia has leukemia, a type of cancer in her blood and spinal fluid” was the most horrible words I had ever heard in my life until, “Katia has relapsed, her cancer has returned” and I just never want to hear anything worse than that!! I have seen others suffer that tremendous pain of death that no family should have to endure, no parent should have to face and no loved one should have to succumb to. To me, it is unbearable. I shudder at the thought.

In today’s economic times, so many people that had really taken the time and effort to plan out their retirements for years have lost everything, not only their retirement but their jobs and healthcare. The bottom has been ripped out from under them. College graduates who went to college with a specific goal in mind (what they were told would be beneficial for them) graduated and were unable to find a job either in the field they studied for or in many cases, any job at all. Many households that had been run on dual incomes were suddenly down to one or even one part time income. And so many American households were suddenly without health insurance because employers had to either cut the insurance or more employees.

I know a lot of this can be argued because it is often between the employer’s word and the employee. It is an argument between the political parties as well. But ultimately, who does it affect? It is affecting each of us. And even as the economy is “building back up”, so they say, we are still feeling all of the effects of it falling out beneath us.

For one, there is a complete lack of trust for nearly every decision being made. Not just by our government even though that is a big part. With elections coming up for many officials in November, everything being said by them seems like a lie, a cover-up or a half-truth. In Washington, there seems to be more arguments and debating back and forth over everything than in High School or on an MTV Reality show. It is getting to the point, there needs to be polygraph machines for most state and federal positions. But then there would have to be more people hired to run the polygraphs and people hired to oversee those people to make sure they were running them fairly and correctly and overseen by each represented political party… You see where I am going.

Okay, so back to life changes and I am not talking about Cialis and the tubs in the middle of the woods (I am so tired of seeing those commercials! Can the people not just finish what they are working on instead of running off to the woods and the bathtubs? Ugh!)

I have discussed before the fact we all have our daily lives in another blog I have written during my daughter’s journey and her treatments for cancer. In it, I wrote about traffic and how people hate to be stuck in traffic or in line at a grocery store or particularly Walmart! Their lines are long and the store is so noisy. I have to admit that.

If you read my blog early, “Tax Day 2002”, I talked about transferring from one hospital to another the day my 2 ½ year old daughter was diagnosed with cancer and going over the bridge. It crosses over the Bay from Tampa to St. Pete. My life definitely changed at that moment. Before that, I felt like I knew everything about my baby. I knew everything to do for her, everything about her, every mark on her body, what to do if she felt bad and how each day was going to be… so I thought.

Well, on the other side of that bridge, that was stripped from me as we walked onto the Oncology Floor of All Children’s Hospital. Doctors and Nurses would be making the decisions for her and still do on a lot of things even to this day. They and I do work together and did throughout all of Katia’s care but the fact is, I am Katia’s Mommy and I am supposed to make everything better, always! I couldn’t make cancer better. I couldn’t dress it up or kiss it away. That sucked!

So, back to the bridge and the lesson on it.

When Katia later relapsed in August of 2003, we crossed that bridge to admit her into the hospital. What we didn’t know is it would be 9 months before she would come back across that bridge and return home. NINE MONTHS!! We lived in the hospital! We go back and forth to clinic and we used to go back and forth multiple times per week and per month and still go back and forth quite a lot. I never take those trips for granted, ever.

Why? For one, we have great medical care. We have Katia!! She is alive and is 10 years old!! She is a miracle! She didn’t have a match for a marrow donor for months and months and finally one was found and saved her life! We have great doctors. We have insurance. We have the ability to go to clinic. We have so many moments that many parents and loved ones don’t have anymore with their loved ones.

So, I don’t get upset if I get stuck in traffic on the bridge. I am grateful for it. Sounds crazy? I take the time to look around and enjoy the water, the skyline of Tampa and I wonder what the people around me in traffic are thinking about.

When I get stuck in Walmart, I may not be AS thankful but I am grateful to be able to buy groceries, to be able to have the health to stand there, that whoever’s child is crying is healthy enough to be in the store (Katia’s immune system is too low to go to Walmart) and just the fact that I am out with a free moment alone (oh admit it, we all like our free time!)

Of course, I GermX the moment I walk out of Walmart, who am I kidding? But I am a GermX freak so I GermX when I walk out of any place.

Due to everything I have been around and seen what I have seen. I tend to have a pretty high tolerance for people having a bad day. If someone is rude or in a rush, I tend to think about the fact they may have just lost their job, been cut down to less hours, lost a loved one, received some very bad news via a phone call, etc.

I have been that person so I tend to see that person in others.

In today’s world, I think we each need to try to help fix what is around us in some way and not point fingers. If a child is crying, bawling and throwing canned goods at their Mom (yes, I do think discipline is definitely necessary when bringing up kids) I think the Mom probably knows the scene this is causing and sometimes I can see it in their face that they would prefer to leave but they just have to pick up something before leaving. I also know of the medical conditions that can cause problems like this and just really can’t be helped all the time. It could be a number of things. I just try to carry on and get my stuff done and not add to the situation.

I am not a passive person as you can see by my other blogs but do try to be understanding and tolerant and appreciate what each day brings. I feel for kids these days because compared to 20 and 30 years ago, parents are so much more busy and stressed and children these days are so multi-tasked and involved, I can see why they are so high strung. I will save that for another blog. If you haven’t read, “Privacy Matters”, it is a good read for anyone that has kids online. Keep them and you safe. Our children are precious! It doesn’t matter how much they think they are nondestructive.

Thanks for dropping by.

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TAX DAY 2002

Has there ever been a moment when it seemed everything around you was going in fast motion and your world suddenly slowed down to slow motion, sound started to echo and you felt like possibly your head could rupture at any moment? Well, that was this day for me 8 years ago. Most people refer to April 15th as Tax Day. But, to me, it is the day my, then 2 year old was diagnosed with cancer. My world stopped. Well, my world as I knew it then. Everything changed and has never gone back to the way it was before that day.

Today though, she is 10 years old. She is one of the lucky ones. That word lucky is used so many different ways. Some people are lucky because they win a lot of money or they didn’t get caught doing something they shouldn’t have done. I guess either way, “lucky” would be a word that could fit in both cases. Other people use the word “lucky” when they get home and find out their house was destroyed by fire and they weren’t home at the time or their car was nearly hit by a train by mere seconds… (that is much more than luck!)

In today’s world, many people consider themselves lucky to still have their job or to find a new job and yes, they are lucky and grateful and blessed. There is always the opposite of lucky which I guess would be unlucky but I don’t like to just say someone is unlucky because things don’t just play out due to luck. There are a lot of things that are unfortunate and we see that more and more.

But, today I am going to focus on what started 8 years ago.

The world, our world at least, came crashing down! We weren’t thinking about taxes, what I was going to make for dinner, what was going to happen at school the next day…. Heck, I don’t think I even gave thought to if I picked up my purse before we headed from one hospital to the next. Really, everything just stopped for a while. I didn’t feel like someone hit me with a bunch of bad news or anything because for our youngest daughter, things had been going downhill for a few months. She had been going from one doctor to the next for a while. You want answers to why things are going wrong but you never want the answer to be CANCER! Not that answer! You can have that back and give me another answer, thank you.

I remember though my first instinct was to not act upset in front of my daughter, Katia (she was the one that was just diagnosed). She was just a 2 year old little girl that had already seen too many doctors, been through too many procedures and had just spent too much time feeling bad lately. I knew enough about what I was hearing to know a few things right off the bat.

1. Cancer is not always a death sentence.

2. This was going to mean a lot of explaining to her sisters (then ages 7 and 11)

3. Katia was going to get much more sick before she had a chance to get better.

4. We were going to have to face this with a very positive attitude.

All of that was just buzzing in my head and we were put into an ambulance to head across the Bay Area to another hospital that a Pediatric Oncology Unit. This would end up being home away from home for us over the coming years. Pediatric Oncology Specialist, Nurses, Staff are amazing people!

On the way over, Katia was just sleepy and not feeling well but the ambulance had a lot of things kind of bouncing around and it would scare her at times and other time amuse her. I was watching the traffic outside and thinking how I had crossed over the same bridge so many times and never thought about how many people’s lives had possibly changed just as ours were at the moment. People just don’t think about that. I was thinking about the fact I had never imagined one of my kids would be one of those little children fighting cancer. People don’t think about that either. I was trying to imagine what would happen next and I couldn’t. I am a planner. I don’t like not knowing what is coming up next and my whole world now was all about not knowing what was next. I didn’t know anything about tomorrow. I didn’t know anything it seemed! How could my baby have cancer in her and I have never known? I knew everything about her.

When we were wheeled up to the Oncology Unit, different patients and parents were watching us and we were looking around while also being talked to and shown to a room. A lot happened on that day. But, I will never forget that day. We were the “New Family” on the Pediatric Oncology Unit. Over the years, we have seen that many times when new families come up and you never ever want to see that happen. I wish we had been the last ones to enter as new patients.

We went over a lot of paperwork that day. Katia had a lot of blood work done and more set up for the next day. We had a lot of visitors between family and friends. Everyone was just shocked when they heard she had been diagnosed with cancer. She had been diagnosed with Acute Myelogenous leukemia. She was very sick and had a long fight with very intense treatments ahead of her. She has not had an easy road, nor a predictable road since that time but the fact is her road is a continuing road.

Katia’s journey has been full of blessings and we have been so fortunate to have met many wonderful people along the way and that we are able to work with still. She has amazing doctors and receives at All Children’s in St. Pete where they have always gone above and beyond to give the best of care and stayed ahead of Katia’s care. Is Katia lucky?? By all means! Katia loves ladybugs and ladybugs are said to bring a person luck so I suppose she is surrounded by luck. Katia has also had a life full of miracles.

So, on Tax Day 2010 I can’t help but to always think how much our life CHANGED on Tax Day 2002 and continues to change each day.

“The great use of life is to spend it on something that will outlast it.” James Truslow Adams

To learn more about Katia and her day to day journey, visit