PRESS RELEASE

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.”

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?

5/3/07

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

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.

4/24/07

I have been the ultimate blog slacker. I have had blogs floating around in my head and I just don’t post them. But are you really missing being inside my head? I mean really. The weather has finally broken and it has been great to be outside. In 5 or so weeks I will have been married a whole year. Kick ass. All my MRI health stuff has been coming up clear which is great, I start another round of chemo on May 1^st. I had a birthday April 12, 34 now. So I haven’t written and neither have some of you. I have written to some of you and some didn’t write back. And on Myspace would the Bulletin whores stop I mean promote your band, tv show etc. But to post up to 3 bulletins a day because you can’t decide your cereal in the morning. I know I should just drop them if I don’t want to see it. Myspace is a sick cult dammit. Global warming final comment from me: yes there are some responsible steps we can all take: Al Gore’s house’s energy consumption= 20 average households. John Kerry has a fleet of SUV’s, Sheryl Crow has 2 tour buses 2 semi’s and several vehicle’s on tour. Oh you and me no more 20 trips for everything knock a bunch out on one trip. OK ice age was a long time ago, newsflash the globe has been warming up since or else we would be back in an ice age and most of that warming took place before cars, the industrial revolution etc..

In April, Maya Angelou was interviewed by Oprah on her 70+ birthday.

Oprah asked her what she thought of growing older.

And, there on television, she said it was "exciting." Regarding body changes, she said there were many, occurring every day...like her breasts.

They seem to be in a race to see which will reach her waist, first.

The audience laughed so hard they cried. She is such a simple and honest woman, with so much wisdom in her words!

Maya Angelou said this:

"I've learned that no matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow."

"I've learned that you can tell a lot about a person by the way he/she handles these three things: a rainy day, lost luggage, and tangled Christmas tree lights."

"I've learned that regardless of your relationship with your parents, you'll miss them when they're gone from your life."

"I've learned that making a 'living' is not the same thing as 'making a life'."

"I've learned that life sometimes gives you a second chance."

"I've learned that you shouldn't go through life with a catcher's mitt on both hands; you need to be able to throw some things back."

"I've learned that whenever I decide something with an open heart, I usually make the right decision."

"I've learned that even when I have pains, I don't have to be one."

"I've learned that every day you should reach out and touch someone.

People love a warm hug, or just a friendly pat on the back..."

"I've learned that I still have a lot to learn."

"I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel."

People that have the hex will understand. People that don’t are the others. Since 10/11/99 I have known the hex. 10/11/99 I found out I had a monster attacking my brain. And from that point forward I became someone with a hex, not an other. From that point on I was Bob The Brain because of a brain tumor. It was a random act of misery. There are people that get the same invitation to the hex club everyday. And when the radiation took my hair then it was a visual cue to me and the others. Since moving to Pa, I have heard about someone’s wife, father, ex-husband, family co-worker, and a few others that I am forgetting I am sure, all that have passed or fighting the brain hex. It is almost spookey to be around all these people and almost inspirational, I think the others that have been affected by this monster might be happy to talk to someone that is here and alive. I am a hex survivor, although I did have that dream last night that I was back in the hospital.

2/23/07

One good thing about music is that when it hits you you feel no pain

O.A.R.

OK I meant to catch up earlier so now you are just getting the cliff notes version.

Snow started 2/13 (Tuesday)

Our street wasn’t plowed until 2/16 (Friday)

Yes we were ice locked onto our block for that whole time. Heather couldn’t get to school and I had to break up our 80 foot driveway with a spade shovel sections at a time.

It sucked.

This past Monday I went to the doctors office, a rescheduled appointment from last Thursday when we couldn’t get out (see above).

Tuesday I went back to the hospital for a chemo injection. Drama started here. Now I have spent way too many hours at these places. So it isn’t so stressful. But, I was talking with a man next to me and my left arm had a little seizure probably like 10 seconds or so. I was the only one that knew at the time but it freaked me out. I haven’t had anything in 2 years.

Now the first question is why?

Well the answer is not simple, or it is if you look at the real answer no one knows.

1. I am doing chemo which compromises your bodies ability to keep adequate levels of my anti-seizure meds in my system.
2. Could have been some stress
3. They just took my blood pressure on that arm it could have triggered it
4. I have been slowly lowering one of my medications and it could have been that.
5. My MRI’s have been clear it shouldn’t be anything under the hood.
6. No one knows

Needless to say I have been just relaxing at home since I got home from that appointment.

The world breaks everyone and afterward many are strong in the broken places. But those that will not break it kills. It kills the very good and the very gentle and the very brave impartially. If you are none of these you can be sure it will kill you too but there will be no special hurry.

Ernest Hemingway, A Farewell to Arms, 1929

Ernest Hemingway

Ernest Hemingway

2/7/07

Man so many years I fumbled the ball. I feel like I dabbled in a lot of things but was never really good at any of it.

You ever just wonder what was my calling supposed to be? I mean I played instruments, but never fluid.

I am still a bad driver but better than I once was.

I am not interested in sports in conventional ones I quit early, I think after I caught a pop up fly in little league practice with my nose.

Then I was into BMX racing, and skateboarding. The racing I dabbled in, the skateboard I couldn’t do a trick on Halloween.

I don’t know you name it from High School through college I did a tour of the worlds worst jobs. I pumped gas, worked in the mall, worked in warehouses I worked in factories I worked in retail sales on commission. None of my jobs were glamorous.
Out of college I never truly got into the record industry that has been bleeding since I left college.

If it wasn’t for I tunes turning retail sales around the record industry would be even worse now. They used to call the web a phase. Now people have sounded the death knell for compact discs. So nothing truly lost there I would have just been downsized along the way.

Post college I had a decent run in radio syndication, a year in an indie label back to radio syndication where I still was making crumbs until I got into the sales end. There I got to travel every other week, see cities I would have not seen otherwise. I was about middle of the pack, not top sales dog by any means. But I held my own.

Then comes the saga of how I was laid off 3 times by the same company for all intensive purposes, it was sold twice so it wasn’t owned by the same people. Twice it was while I was out on disability. So those don’t technically count but they happened. So I was supposed to be hired over to the other department but the management passed on me they wanted somebody they could control and was new.

Ironically enough they called me for a position a couple months later. I worked with them for a year then had to go back out on disability for 19 months.

So I was out of work again. And while I was on disability they called me to lay me off Truth be told they wanted me to come into the city so they could lay me off. I said no so they did it over the phone. I cussed them out, professionally of course.

It was all part of a big down size company sell off so there were a bunch of people that were cut. Then they started calling us back one by one when they needed new staff.

So I went back again lasted 6 months this time, then went out sick on disability again. After 12 months I was taken off the books.

So I have been off for 25 months now. And now I am working on my health.

Life takes turns like a river our control over it? It depends on the situation and timing.  People come and go and some come back again.  

Don’t let it get you to down

My body is borrowed

yeah, i got it on loan

for the time in between my mom and some maggots

Hey my journey has gotten me to a great position in life.

During the last several years Heather has become my guide.

Personal Jesus

Your own, personal, Jesus

someone to hear your prayers,

someone who cares

Your own, personal, Jesus

someone to hear your prayers,

someone who's there

Feeling unknown

and you're all alone,

flesh and bone,

by the telephone,

lift up the receiver,

i'll make you a believer

Take second best,

put me to the test,

things on your chest,

you need to confess,

i will deliver,

you know i'm a forgiver

Reach out and touch faith

Reach out and touch faith

Your own, personal, Jesus

someone to hear your prayers,

someone who cares

Your own, personal, Jesus

someone to hear your prayers,

someone to care

Feeling unknown

and you're all alone,

flesh and bone,

by the telephone,

lift up the receiver,

i'll make you a believer

i will deliver,

you know i'm a forgiver

Reach out and touch faith

Reach out and touch faith

Reach out and touch faith

Reach out and touch faith

1/31/07

Last night was the night that never ended.

We went to the doctor’s office in the afternoon. I got my one chemo injection there. I wasn’t feeling to bad a little tired but what no biggie. We got home ate dinner. Then I took my anti-nausea pill. Then chemo watched a little TV with Heather during all of this. She was studying. I passed out about 11:30. Heather watched a little more TV. I got up because nature called at almost 2 am. I woke up again at 2:30 feeling nauseous and sweaty well not a good sign. I popped another pill well to late the game was on. To save your physical well being I will spare the throw by throw, but this went on until 6:30 am I lost count around the 7^th or 8^th trip. It had to be 10 plus times of multiple gut wrenching throws. Never before in the history of my treatment, and we know I got history, have I experienced this much suffering non-stop. Finally around 6:30 am it must have subs-sided and I passed out until 8 am. I couldn’t even lift my head. It felt like I was crushed into the mattress. Everything hurt. I popped another pill ate a couple crackers sipped a little water, took my seizure med’s and got up for a couple minutes barely able to move. You know that punched in the stomach feeling? I still have it now. I waited until 9am and made a few phone calls to my doctors. I got new anti nausea that melt on your tongue so you don’t have to wait for it to break down and tonight I am just going to try one chemo pill. I can’t go through another night like that. I tell you those are quitting night’s right there. Needless to say Heather got no sleep either and still had to function today. She is my support system, and helps keep on top of me. So today I rested up for my rematch tonight. Chemo is one of the shittiest things that can happen to ya.

1/29/07

So tomorrow I am starting the 2^nd and 3^rd drugs of my new chemo round. I started the first one last Tuesday. I felt sick for a couple days. I don’t know how I will feel after tomorrow. The pills I take for 2 weeks and I have to maintain a specific diet for 2 weeks after that. I am not thrilled about having to watch what I eat for a month so I don’t get an allergic reaction. Chemo sucks but every family has a junkie that’s sick in my family it’s me. The treatment can’t be easy to survive. It’s like having to walk up hill to school both ways. Heather is really helping me and will make sure I get through this ok. Hey dig on waiting to feel better. They make medicine to make you feel better, but it mess’s with your digestion system. So it is a balance system to try to juggle. You never get it right but you try. To balance one drug you need to take 2 different drugs to counteract it’s side effects. The first drug has side effects so you take the 2^nd one before you take that one. Then the first drug to help the second one has side effects so you take the third. Welcome to my nightmare.