November 2002 rediagnosed with a recurring tumor I am going to bring you through the whole fun thing
|
|
| |
|
|
| |
This is where you stick random tidbits of information about yourself.
|
|
|
|
Brain Tumor History And Other Rants
|
|
| |
Friday, August 10, 2007
Friday, August 10, 2007
rantings
8/6/07
I used to think how boring a wife and a house some pets and some kids would be for a life. When I was younger I had to grow up and have it different well 1. My raging hormones wanted tons of women. 2. I had to grow up and be rich, preferably a musician who would have ready access to said women. Some things got in the way as I came of age. 1. I did not have the self-discipline to learn music well enough (or the blessed natural talent), 2. Nor was I born with the looks for obtaining aforementioned harem of women. I wasted a lot of my years doing lots of time wasteful things. Hanging around other peoples bands, working part-time jobs, hanging out doing nothing a lot. It seems I got myself into a lot of things making me have a little working knowledge about a lot but mastering none, so basically I should have become a band manager but even those prospects were few and hard to find and the bands I knew didn't have talent, to make all of us rich. I always stayed interested in music though. I have been to countless concerts, own a monster music collection.
So I guess life slows you down. Some people keep up the speed, me I am a home body. My wife is the same way lucky for me, we both enjoy being around the house. We hardly ever go out to sit down and eat we never have. We have kind of encapsulated ourselves in our house in a way. We love our house and don't want for running around crazy. We both love to read books, how boring right? I do miss the convenience of being able to see some of our NJ friends more often, but I still try to keep some of them close with phone calls and email contact. That's not to say our door is ever closed to friends on the contrary it is always open.
People in Pa are weird, and I know weird. I mean I am no longer the hustle and bustle person that worked in NYC by far. I have slowed down but some people out here are truly back woods and reverse. Now I don't want to be back in NJ or anything we are very happy out here. Just realize it is a culture shock on some levels especially when you deal with PA life long residents, we are invading their country life so we are the ones that need to adapt. Part of my made up theory is the farther away from NYC you get the further back in time the people are. Everything happens in ..:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" />New York at least a year before anywhere else. Ever go to a mall in South Jersey they are 2 years behind New York in fashion.
8/8/07
Adversity comes in all shapes and sizes, colors and forms. Adversity doesn't schedule an appointment or show up invited (usually). Why talk about dealing with it who wants to have to hear about someone else's problems. Do you know how to handle all your own problems or a story to tell someone else having a problem? I guess that is a lot of what religion does is helps apply age old stories to modern situations, to show that problems always existed and will continue to exist so if you can learn how to constructively conquer them maybe you will learn a lesson from it. Life is a pain in the butt let's face it.
Then there are those with chronic complaining syndrome for no reason. Hypochondriacs, people that like to hear themselves talk you know the type let them wake up with cancer then they will have something to talk about.
8/10/07
I am back on the chemo regimen. Last night was one of those hangover you might be sick and aren't gonna sleep much, but damn is your body tired, nights. Pretty much not worth talking about I have been down this road before (4th time for this chemo protocol about a 4 month cycle), and hopefully this time next year I will be done with this program. So today I have been a big old lazy bastard usually I clean the house on Friday, not this one. Watched some TV, ate when I could fed the cats surfed the web not much else.
I still feel blessed I met my wife she is a rock for me and gets me, as much as I am a blabber mouth she is a listener and is tired of listening to the stories that I can remember. Now my challenge is to come up with stories she hasn't heard which requires more memory. I didn't have much from the womb and the radiation treatment took more of the little they gave me at the factory. That's why I never wanted to do drugs I actually needed the brain cells I came with.
4:21 PM
Monday, August 06, 2007
8/6/07
I’m The Invisible Man
Yes it has been a long time since I posted anything. Do I have any drastic reason why? Nope part laziness I guess I haven’t written much of anything, and nothing to post. So here’s the highlight reel: We are married over a year now, Summer is almost over, no trips this year.
I learned a lot of things over time. Surely a sign of aging. People are transparent and transient. I have been away from work for a long time and no matter what I did in the time I was there the company succeeded before and after me. Now in corporate America that isn’t something that you can take personally, you make no real difference. It’s just some people think more of themselves than they really matter. And the really annoying ones just bitch and moan they don’t like the job, then do everyone a favor and get out. The best you can do is put yourself in a job you like and can walk in and out of and put your hours in for your little piece of the pie. There will usually be someone getting a bigger piece of that pie every week.
Now sales that is a challenge you write your own check. You can make a lot and the company adores you, and sometimes the cycle swings down and you get real nervous, you can never live on that high commission money making lifestyle. And then someone else is the sales pet. I myself was better at building relationship sales versus the meet and quick close as per say a car salesperson or an in home sales person.
But overall work is work, in a lot of ways it helps define you, and at my age I should be in the midst of a successful career. Take all that away and it actually affects your head. Especially if you worked in a social job like I had, now I socialize with the talk radio when I am home alone, so it doesn’t seem so quiet. I also have nothing much to talk about with average working folk. Not much new here, just surviving which is cool enough for me truthfully. I am not trying to gain sympathy it is just an experience that most people never get in life. It is the loneliness of old age at the wrong time in life. It doesn’t fit right. I got nothing to convey of my day to day experiences to someone working all the time. I guess that’s why I truly am the invisible man.
5:16 PM
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
Tuesday, April 24, 2007
4/24/07
Where you at?
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 1st. 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..
5:46 PM
|
|
| |
|
|
|
