November 2002 rediagnosed with a recurring tumor I am going to bring you through the whole fun thing


























 
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Brain Tumor History And Other Rants
 
Friday, May 11, 2007  
NBTF's Latest Press Release

PRESS RELEASE

IMPACT OF BRAIN TUMORS LEAVES MANY PATIENTS FINANCIALLY DESTITUTE

First study on financial impact of brain tumors paints a bleak picture for insured and employed patients

SAN FRANCISCO, CA, May 9, 2007 – A new study released by the National Brain Tumor Foundation, The Financial Impact of a Brain Tumor Diagnosis on Patients and Families, reveals that the financial impact for patients suffering from brain tumors is devastating and life-changing. The results of a yearlong survey of mostly middle-class patients and caregivers show conclusively that brain tumor-related expenses can force even educated, employed and well-insured patients to become financially destitute.

According to Harriet Patterson, MPH, Director of Patient Services for the National Brain Tumor Foundation (NBTF), patients can become financially ruined because of the high cost of treatment. “This survey, the first of its kind, is a wake-up call to alert us to the dramatic financial impact that patients and families face when diagnosed with a brain tumor,” said Patterson. “The high cost of treatment, even for insured individuals, coupled with their inability to work and obtain disability income leaves people financially strapped. And that debt continues not only during the treatment period, but for those unable to go back to work, throughout the rest of their lives.”

The survey showed that a startling 91% of patients were working and had insurance before being diagnosed. Despite this fact, many middle-income people had to borrow money from friends and family, max out credit cards, sell their homes and cars, declare bankruptcy and in some cases even become homeless because they couldn’t pay their bills.

“The brain is the center of thought and personality and much of an individual’s function,” explains Patterson. “Unlike other serious illnesses, tumors and their treatments often have severe impact that limits an individual’s ability to work, drive, socialize and more. The inability to return to work affects not only household income but the availability and affordability of health insurance coverage.”

Patterson went on to say that factors such as “designer” cancer drugs, which are often the protocol for treating malignant brain tumors, are very costly, and the regimen is frequently long-term, sometimes up to 24 months For patients with insurance coverage, the co-pays for these prescriptions can be more than $1,000.00 a month. Expenses like medications, physician visits, hospital bills, follow-up MRIs, supplements and services such as rehabilitation and transportation all add up.

The study also found that there are no systems currently in place to fill the gap and help patients who have insurance coverage. The National Brain Tumor Foundation’s Patient Help Fund is one of the few financial assistance programs available to help the brain tumor community fight the financial burden of this illness.

“The good news is that patients are being cured more often and are surviving longer,” said Dr. Paul Fisher, Associate Professor of Neurology at the Stanford University School of Medicine. “The bad news is that with every year of survival comes the unimaginable financial burden for patients and their families. The bottom line is that no one can afford to have a brain tumor.”

The nationwide survey, which began in the summer of 2006, generated response from 491 individuals – 277 patients and 214 caregivers. While more than 90 percent of those surveyed had insurance, the resulting debt drastically influenced the quality of life for the patients and their families.

The survey also revealed that disability insurance was extremely difficult to obtain for brain tumor patients, making the debt unmanageable. The extensive disability applications make it difficult for cognitively impaired patients to accurately complete the forms. This often results in denials on the first application - while those who are accepted must wait two years before receiving Medicare disability coverage. Thus patients often face long periods with no insurance.

“Brain tumors not only represent a medical crisis for patients and their families,” said Patterson, “but this study also shows that they represent a financial crisis as well.”


2:45 PM

Wednesday, May 09, 2007  

NIN

Right Where It Belongs

see the animal in his cage that you built?
are you sure what side you're on?
better not look him too closely in the eye...
are you sure what side of the glass you're on?

see the safety of the life you have built?
everything where it belongs...
feel the hollowness inside of your heart
and it's all right where it belongs...

what if everything around you isn't quite what it seems?
what if all the world you think you know is an elaborate dream?
and if you look at your reflection, is that all you want to be?
what if you could look right through the crack?
would you find yourself... find yourself afraid to see?

what if all the world's inside of your head?
just creations of your own...
your devils and your gods and the living and the dead
and you really are alone
you can live in this illusion
you can choose to believe
you keep looking but you can't find words
are you hiding in the trees?

what if everything around you isn't quite what as seems?

what if all the world you used to know is an elaborate dream?
and if you look at your reflection, is that all you want to be?
what if you could look right through the cracks?
would you find yourself... find yourself afraid to see?


5:15 PM

Thursday, May 03, 2007  

5/3/07

So today is our 11 month anniversary which means our big one year is one month away, we get to eat year old cake… Some highlights are: Bahamas honeymoon coming home to our old house being sold, then moving into our new house one month later. Which entailed moving states and fun dmv and change of address stuff. Well all has stabilized we are now picking out colors for the house to start painting it. Heather went back to school and rocked we are all very proud of her.

In hindsight it is a great life we are where we are supposed to be. We meant our vows then and always will. There is no doubt ever in my mind we are meant to be together. She is my support system, partner, equal, wife. And dammit she puts up with me. She accepted me unconditionally at a time when I didn’t think anyone could invest that much in this broken down old Ford. It has been all those songs that I always wanted to experience, she fits into like that piece of a puzzle I needed.

I can remember being with her and listening to songs and realizing she is the one, one day this song came on while Heather and I were driving and a light bulb went off in my hole in my head:

Kiss Of Life
» Sade

There must have been an angel by my side
Something heavenly led me to you
Look at the sky
It's the color of love
There must have been an angel by my side
Something heavenly came down from above
He led me to you
He led me to you
He built a bridge to your heart
All the way
How many tons of love inside
I can't say

When I was led to you
I knew you were the one for me
I swear the whole world could feel my heartbeat
When I lay eyes on you
Ay ay ay
You wrapped me up in
The color of love

You gave me the kiss of life
Kiss of Life
You gave me the kiss that's like
The kiss of life

Wasn't it clear from the start
Look the sky is full of love
Yeah the sky is full of love
He built a bridge to your heart
All the way
How many tons of love inside
I can't say

You gave me the kiss of life
Kiss of Life
You gave me the kiss that's like
The kiss of life

You gave me the kiss of life
Kiss of Life
You gave me the kiss that's like
The kiss of life

You gave me the kiss of life
Kiss of Life
You gave me the kiss that's like
The kiss of life

You wrapped me up in the color of love
Must have been an angel come down from above
Giving me love yeah
Giving me love yeah

You gave me the kiss of life
Kiss of Life
You gave me the kiss of life
The kiss of life

I love you Heather you rock my world. Thank you for every moment, we have a whole bunch of living to do.

Love,

Bob


1:48 PM

Tuesday, May 01, 2007  

Tuesday, May 01, 2007

something to think about

GEORGE CARLIN (His wife recently died...)
 
Isn't it amazing that George Carlin - gross and mouthy comedian of 
The 70's and 80's - could write something so very eloquent...and so 
Very appropriate.
 
A wonderful Message by George Carlin:
 
The paradox of our time in history is that we have taller buildings
But shorter tempers, wider Freeways , but narrower viewpoints. We spend 
more, but have less, we buy more, but enjoy less. We have bigger houses 
and smaller families, more conveniences, but less time. We have more 
degrees but less sense, more knowledge, but less judgment, more experts,

yet more problems, more medicine, but less wellness.
 
We drink too much, smoke too much, spend too recklessly, laugh too
little, drive too fast, get too angry, stay up too late,

get up too tired, read too little, watch TV too much, and pray too seldom.
 
We have multiplied our possessions, but reduced our values. We talk
Too much, love too seldom, and hate too often.

We've learned how to make a living, but not a life.

We've added years to life not life to years.

We've been all the way to the moon and back,

but have trouble crossing the street to meet a new neighbor.

We conquered outer space but not inner space.

We've done larger things, but not better things.
 
We've cleaned up the air, but polluted the soul. We've conquered the
atom, but not our prejudice. We write more, but learn less. We 
plan more, but accomplish less. We've learned to rush, but not to wait.

We build more computers to hold more information,

to produce more copies than ever, but we communicate less and less.
 
These are the times of fast foods and slow digestion, big men and
Small character, steep profits and shallow relationships. These are the 
days of two incomes but more divorce, fancier houses, but broken homes. 
These are days of quick trips, disposable diapers, throwaway morality,

one night stands, overweight bodies, and pills that do everything from cheer,

to quiet, to kill. It is a time when there is much in the showroom window

and nothing in the stockroom. A time when technology can bring this letter to you,

and a time when you can choose either to share this insight, or to just hit delete...
 
Remember; spend some time with your loved ones, because they are not
going to be around forever. Remember, say a kind word to someone who looks up to you in awe,

because that little person soon will grow up and leave your side.

Remember, to give a warm hug to the one next to you,

because that is the only treasure you can give with your heart and it doesn't cost a cent.
Remember, to say, "I love you" to your partner and your loved ones, but
most of all mean it. A kiss and an embrace will mend hurt when it comes
from deep inside of you.
Remember to hold hands and cherish the moment for someday that 
Person will not be there again. Give time to love, give time to speak!

And give time to share the precious thoughts in your mind.
AND ALWAYS REMEMBER:
Life is not measured by the number of breaths we take, but by the
Moments that take our breath away.

1:24 PM

 
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