Hello Everyone!!!

It's a Beautiful Day here in So. Florida, 76 degree's and sunny, clear skies. I'm gonna go walk on the beach and reflect after I write this.
Maybe take a dip. Water temp is 76 degrees, a little chilly for us natives.

This post is one of life, not death. A little sad, but way funny. If PeteyB wrote it, you know it's got to be a HOOT!

First things First. I want to thank you all from the bottom of my heart for all your Love & Support! No words can express my gratitude.

As most of you know I've been fighting to get treatment because I have no medical insurance. I can see now the PERILS that lie ahead.

My cancer is way advanced. I had already made up my mind to not get treatment, as "the cure is worse than the disease" as some say. BUT THIS FORUM MADE ME TRY! No one wants to die, but we were all born to die. It's just a fact of life.

And no one wants to kill themselves, they just want to kill their pain...

You all wanted me to fight, and convinced me to try. Only to be dragged thru the mud of social services. YOU ALL KNOW MY STORY.

After my last knock down, drag out phone fight, and no return calls from so called "help lines", I have decided to spend my last days being Happy and Worry Free.

Yep, I Quit. I'm taking my bat and ball and going home, so there!

I'm getting all my affairs in order. My utmost concern is for my lovely wife, Melanie. It's hard to say she will be "fine", so I will say she will be "ok". She says the kids are traumitized, but I have spoke with them, and they accept my choice of quality of life vs. treatment. Melissa 23 Born on Easter '84, Peter 21 born on Christmas (who always got his B-day party and presents, we were adament about that!) Robert 19, due date July 5th but we were hoping the 4th, labor induced on the 17th. I remember my wife screaming at the doctor " if you wait any longer, you will have to cut my baby out"!

Our relatives alway teased us that "we would do anything" to avoid a family dinner.

Anyway, I'm smelling the roses and giving more hugs. Planning one of my "GREAT EASTER DINNERS".

I'm also plannig a "BIG CELEBRATION OF LIFE PARTY", another, "ONE FOR THE BOOKS" as I like to say. No crying, only laughter and fond memories, and old stories.

My only worry is pain meds. Also, you will here/read about me as I bring "world Wide" attention to Oral Cancer, and the OCF, and how social services failed me!, at my final destination at the new "skywalk" in the Grand Canyon, many months from now, give or take a few.

I'm gonna book a "flight" with Euthanasia Air Travel at the Grand Canyon in Arizona, upclose and very personal.

I've had a great life, and it ain't over till it's over. So many people never had the chance to do as much as I have. Some more, but I'm Happy!

Here's a few of my "best moments"!

Being coined "the six pack kid" by my inlaws because they lived in a "dry house".
Getting thrown out of a hospital for making my friend with 4 broken ribs laugh to much, maybe they were right, he did have tears in his eyes.
Switching names with my best friend for our Senior year book pictures.
After skinny dipping, explaining to a sherrif that we were diving our motorcycles nude around the lake to dry off, as we were only "cutting" 2nd & 3rd periods, and we were returning to school. He just shook his head, said he'd "buy that" and got in his car and left.
Recalling to my mother with a smirk on my face, 20 years after the fact, how I lied to her to avoid being grounded, only to be slapped.
Eliminating a traffic jam while driving to the Jersey Shore on the Garden State Parkway in 1974 by putting 3 cars abreast and driving 5 MPH for a half hour, then cruising at 55 all the way to Seaside Heights.

You guys keep fighting and encouraging others to do so. I may have surrendered my battle, but I'm still in THE WAR!

If I had Three Wishes they would be: No Diseases, No Hunger, and No Wars.

Favorite song: 'IMAGINE' by John Lennon, it says it all.

Love, Hope, and Prayers to All.

PeteyB

Petey,

You had better be kidding...something like a phone scam, possibly a "forum" scam. How can you give up when you haven't even started the battle. That isn't much of an example to set for your family, or for the rest of us out here fighting the fight. At some point in ones life, we all may need to "resolve ourselves to the inevitable". I don't think that you can possible convince yourself or anyone else that you're there yet. I haven't seen one piece of evidence yet that your condition is beyound hope. What am I missing here? Please, at least get yourself to the next step and see if there is any fight left in you. In six months, I'm looking forward to coming down and having a beer with you. I can't do that if you're not around. I'd reach out and smack you right now if I could.

I was a T3,N2 (stage3),and was never given anything but hope and encouragement by my doctors at Beth Israel in NY. I had my 1 1/2 year checkup yesterday and was told that everything looked great and that my prognosis was now at about 90%. If you get yourself to the right facility I think that you'll also come away encouraged and ready to go toe to toe with the devil. I'm willing to call my doctors and see if they have any ideas or suggestions. I don't know if they would take you on or not, but if they would, are you willing to get your happy ass up here and prove that you've got some fight left in you. Call me at 732-687-3518. As long as you're willing, I'm prepared to stand next to you in this battle.

Rob Jaffe

Rob, I want you on my side!

Petey...You haven't done all that you can do. You know so much about so many things, but somehow you haven't gotten to the right places as far as your healthcare goes. I KNOW that the system will not allow a person in your situation to go without care. Go to a medical center with a medical school and a charity hospital. You claim to be going with quality of life......From what I understand, your "quality of life" will not be very good if you allow this cancer to continue to grow untreated.

I was struck by your obvious affection for your children.....young adults and still in need of your presence and your guidance. Please show them that you love them enough to recruit them for your team.....to see you through this.....to accept whatever the results are......rather than to simply stop trying.

As Rob says, there might be a time in one's life when there is no other option, but you are not nearly there yet. You CAN be treated, and you can live for many more years.......but if you don't try, there is no question that you will NOT live for years.

Life is a journey. We aren't privileged to know what's around the corner, but you know......it doesn't matter, as long as we stay focused on the journey itself and take what comes. It is NEVER what we expected, so...Being in treatment is not the way you wanted to be spending your next year, but when it is over, and when you exit the "dark tunnel" of discouragement and pain, there WILL be light, and there WILL be life, to be enjoyed at a new level....and possibly an even better level than before.

Petey.....get your good brain around this and get one of those kids or your wife or your self to drive you to the places that offer care for the needy, and get yourself into their program. It can NOT be that hard.

I'm mad at you now. Don't expect us to fall in love with you and then have you do this. No way, Jose'!! Get off your duff and get out there......first thing Monday morning.

I want to hear that you have a plan by Monday night. The treatment won't be fun, but it will be interesting...and whatever it is will be better than NOT being here at all.

I know that you are a man of faith, but do you really think that God wants you to give up on the life He gave you?? God loves life. He created us to be with Him for eternity, but he doesn't want us to rush the process by not taking care of our selves in this earthly life.

He gave you those kids to care for and to be an example for. Show them what you are made of. Let them help you through it. It will be bonding. You will give them a gift by allowing them to help you. I am betting that your family will be closer than ever before.

Choose Life, Petey.

I'll be looking for a message on Monday, and I hope that you have made your choice and have made a plan.

We love ya', you funny guy, and we're not gonna let you off the hook so easily.

So there.

Petey,

Hey, please don't give up on getting treatment. I was a Stage 4 and also had no health insurance at time of diagnosis. I had no problems getting to a great head/neck surgeon and he arranged the radiation therapy and chemo. The radiation therapy center had programs to apply for that paid for the cost of treatment and the hospital social worker helped us with programs that paid hospital bills and helped us apply for MediCaid spend-down. After accumulating so many dollars in medical bills (a ratio of our income, I believe) in a 3-month period, then our state MediCaid spend-down program kicked in. The rest we pay out in monthly payments (very reasonable). We may pay on this for the rest of our lives, but that's OK -I have a life and am doing great. From Stage 4 to a full and happy life with no limitations. My kids are now almost 22, l8 and 15 and I look forward to the empty nest years and then grandchildren. Sure the treatment was rough but I got through it. Keep on trying please - forget the phone calls - get in a Doctor's office and let them get the ball rolling-there are programs for the uninsured. Not one doctor or hospital I saw ever even asked us for money up front - radiation center even offered us assistance for gas to get to treatments, we live an hour from there - but we declined that offer - we could handle that! We weren't destitute - just self-employed. We had just started a new small business and thought we could get by without the expense of health insurance for a little while.

All that just to say please don't ever give up-that's not fair to your wife, children and all of us fighting this disease. My doctor has since told me that after my first visit to him, he gave me a less than 10% of surviving and I have had a complete response to treatment and cancer-free for 3 years now. He does not skimp on follow-up care - I see him every 3 months and have had CT scans (which his office discounts heavily) - I get a discount on my office visit if I pay in full at time of visit. I feel assured that if I have a recurrance - there will be no problem getting treated. Please keep trying -

Pam

Dear Petey

It is your right to choose, of course. But did you ask your family for their thoughts? You obviously love them dearly and are all very close. At least allow them to make the decision with you - and please be fully-informed of your medical options.

I was diagnosed with advanced Stage 4 cancer over 4 years ago. Now I am well and leading a normal life with six monthly checkups.

Before I began treatment I asked an oncologist what would happen if I refused treatment. His description was very unpleasant. I would recommend having this discussion with a doctor before you make a final decision.

My favourite song is Imagine also. If only ...

Lots of love from Helen (and please call Rob)

Petey,

In addition to the above advice, please get your wife and kids onto this site as well. If they can start to get themselves informed about this disease and what can be done to treat it, they will be in a better position to help you. You shouldn't have to fight this out completely on your own.

Cathy

Petey,

You have made us laugh and now you make us cry. I have never seen such an outpouring of love. You have touched the hearts of all of us here and we're not going to give up on you.

I will take a sentence from your post..."You guys keep fighting and encouraging others to do so."

You've read the encouragement and you've gotten some suggestions:

Pam did it with no insurance...you can do it.

Call Rob, see what he can do.

Colleen said it all..."Choose Life Petey", how can you disappoint her?

Hey, you even have a cheerleader in Australia. Helen made it, so can you.

So I'm going to put in my 2 cents here. I'm going to call Fox Chase Cancer Center in Philly where I was treated. Rob had a great idea. Maybe they know how you can get to a treatment facility without having insurance. We should all try and make the call. Somehow, someway someone has to find out something that will help you.

We WILL NOT let you give up.

Jerry

Petey B.

I work in health care and I am telling you uninsured patients are treated every day. You are not dealing with the right facility. Pam's story proves that. Are you dealing with the state medicaid office directly?

Have you called your congressman's office to ask for their help?

Giving up is not noble, it's giving up.

JoAnne

Petey - Keep fighting this! How can you quit when you have so many people in this fight with you?! My son also did it without insurance and no job. He got a 40% discount at the hospital, free Amifostine shots because of a program with the drug company and now that he has a job, they accept very, very low monthly payments. There are still things you can do about getting the help that you need which you can see by just looking at the posts above, but you have to get some of YOUR fight going, too! Stay with us!

Annette

Petey:
I know you've already got a heavy dose of this, but shame on you. You are being selfish to give up like that. You will be gone and your family will be left with the anguish, guilt, and sadness. I know because I am speaking from experience. It has been 10 years since my dad died from esophogeal cancer. To this day I couldn't tell you the stage or what his chances were, I just know that he chose to give up and there was no convincing him otherwise. I stupidly believed what he said to be his only option and didn't try anything else. He denied us the experience of continuting to have a father. After ten years, I am still deeply saddened by this loss. At some point, I realized that it's one thing to miss a person. True loss is what will never be--he'll never be able to participate in our life events, big and small. So, I ask you please to consider your family, your wife and your kids. I'm sure they want you to fight and to be here for them and for yourself!

Many people on this forum had a much worse dx/personal situation and made it through. Remember--insurance isn't the commodity that you need right now. It's health care. Do whatever you have to do to get it. Don't die from a terminal case of pride.

Chris

All I can say is Petey, PLEASE! You have got me crying!! Do not give up or in to this "bastard of a disease" as an old friend from this forum used to say! Please Petey I will try to help you if possible.....I live in Baltimore, Md. and I know that there are patients being treated for these types of cancer right here in downtown Baltimore daily.....DO NOT GIVE UP!!!!!!!!!!Carol

Petey,
I know that you are early in recovery and maybe you are even on the "pink cloud" but you really need to do a reality check here and listen to what others have told you. Many of us had NO insurance (including yours truly) going into this yet still figured out ways to get quality care.

I am afraid that the only thing that is going to be "rolling" here is the grass over your plot and have you subject you and your family to a horrific cancer death experience AND in hospice care.

You can might make light of this and I applaud you're being able to keep a sense of humor but I have been on the boards for some years now and have seen, up close and personal, the really UGLY side of this.

This could be you: http://www.sptimes.com/News/61599/Floridian/He_wanted_you_to_know.shtml

Obviously you have been following Paul R's thread.

Get off of your pity party (thinly veiled as humor and sarcasm - we see right through this) and find a treatment center NOW. Publicly funded institutions HAVE to take a certain amount of uninsured patients - keep looking and quit complaining that dogs get better care.

Petey, There is nothing noble, humorous or admirable about giving up the fight before you start. Aside from the people here, I also know of other people without insurance that had this disease and got the treatment they needed. Call your nearest CCC--walk out on an yone who tells you you have to wait and see. You don't have time for that.

Also I see from what you posted elsewhere that you have BOT cancer and believe you will have to have your enture tongue removed as a result. That is probably NOT the case--many people here have had their BOT cancer treated with rad and chemo alone and had no surgery whatsoever. Don't make assumptions about how bad a quality of life your treatment will leave you with until you actually se an expert in the field!

Second, I am here to tell you from first hand experience that even if you are one of the rare people on this board who end up with some significant qulity of life issue, like problems swallowing or speaking, there is still a heck of a lot more life to enjoy than you will have dying from this disease without a fight!

You can cover your actions with humor and bravado and blame at the system but what I hear, probably what many of us hear when we read this, is fear. Remember we've been there and we've gotten through it and you can too. Remember too that in this case what you should be fearing more is how your life will end without treatment. There will not much quality of life there. Really.

Nelie

Petey,

Man these folks really let you have it, didn't they? Well you deserve it. There must be something we're missing here, cause several folks have told you some possible avenues to get treated even though you don't have insurance. I too had BOT cancer, received radiation and chemo with no surgery...my quality of life ain't that bad.

Try what the folks are telling you above, I've been on this board long enough to know that Gary Allsebrook know his s*** so contact him or PM him and figure this out. If you have to agree to pay the rest of your life, you can sort that out later.

I will pray that you CHOOSE LIFE if not for your sake, then your families!
Tim

Petey,

How can u do this ? You said to me once it is like we have known each other forever! I sit here in tears , I can imagine what your wife and children feel. U cant give up ! You dont know the stage you are even at yet ! Tomorrow is your appt on the 2nd and you better go ! I told you I will call and do whatever i can !!!! I made it through and I am the biggest BABY !!! You havent even begun yet ......Dont let the red tape get you down ! I cant read your post as things go down hill because you wont try and forgive me for being rude but at this point "YOU ARE BEING SELFISH !!!!!!" you dont even have enough info to make the decison on whether or not to fight ! ANd until you get that info you are being unfair !!!!!!!!!!!!!!!!!!!!! STAND UP FOR YOURSELF.. AND ATLEAT GET THE INFO AND MAKE AN EDUCATED DECISION !


Very dissapointed
Shar

Petey, I meant to say that people do get treatment without insurance, please check into it further, I received your PM and yes I have followed your posts.
Could you do a little more checking into the treatment, or have family or friends help you with it? I am sure they do NOT want to lose you without giving it a go.....God Bless you, Carol

Petey,
So did you go the appointment on the second? Did you get your slides read? Did you get a treatment plan?

You finally give your wife and family a chance to have SOBER Petey and now you are going to throw ALL that away?

You obviously have the smarts to negociate the frustrating red tape to get the treatment. Get off your 'pink cloud', call your sponser and get on with treatment. If they tell you it can not be cured, then we will back off. However, everyday you wait the cancer is growing. Take Brians advice, don't let an $800 bill stop you from getting a treatment plan.

Please post back on this thread and let us know what you REALLY decided to do. Posting on Paul R.s
thread about his 71 year frail mother is not a good place to post.

I do hope you have come to your senses since I read your initial post.

Take care,
Eileen

Petey,

My husband has chemo today and while we are there I am going to ask questions and hopefully get answers for you.
We are not far from you, in Charleston, SC and my husband goes to the Medical University of South Carolina. They are wonderful there and because it is also a university I think there is a way to get you in whereas you would have more difficulty with a regular facility.

If all else fails, we can all, in our corners of the world, raise money for your cause...your cause is LIFE!! I know I would be willing to talk to people and put decorated cans around in the hospitals, gas stations...you name it!

There is a way...just hang in there a little longer, we can find a way to get you treatment!!

Petey,

I am Lissys husband and you can bet we will be asking questions today to see what we can do to help. You may have to come to Charleston but there is a Hope House right across the street from the hospital that you can stay in while treatment is going on for free, with food, beds, etc. I have to agree that this is not a good example to set for your children. It seems to me that you are a happy go lucky fella just judging by your post and also that you are full of life. To just give up and say thats it isnt even an option here. You just trust in God to find a way for you to get the treatment you need and it will happen my friend. Either me or Lissy will post back here as soon as we find something out.

God Bless you Petey,

Billy

Thank You Billy and Linda
This post was written 30 days ago. Everyone on the board was pushing me not to give up. Well I tried and tried. Even yesterday 5-1-07, I could not get help. I told my wife I was selling everything, have her pick out a small house we could almost pay for cash. (procedes from 3 properties) Then sell all my tools and equipment so she would be "ok" when I left. (plus life insurance) I had totally given up. The thing that hurt also was going to be trying to explain to everyone here that I had exausted all possibilities, which I had. Then I was gonna just hope for a month saying my goodbyes, and when it got to bad, go visit the new Skywalk in the Grand Canyon. Then I got the phone call from the medical director of a local hospital, and to come in today. THIS YOU WON'T BELIEVE! THERE WE 5 DOCTORS AND THE HOSPITAL CEO WAITING FOR ME. THEY WERE MY TUMOR BOARD, OR "TEAM" AS THEY PUT IT. IN 1 HOUR I HAD MY PET /CT DONE. THEN I WENT TO EACH DOCTORS OFFICE ON THE COMPLEX AND THEY ALL EXPLAINED THEIR TASK IN THE PROCEDURES. WHILE WITH MY RO- DR. DAAS, A PHONE CALL SAID CHEST X-RAY WAS CLEAR AND PET WAS GOOD, I WILL GET SURGERY NEXT WEEK (BEING SCHEDUALED) AND RADIATION STARTS 3 WEEKS AFTER. THESE DOCTORS TREATED ME LIKE I WAS ROYALTY. I'M STILL AMAZED BY WHAT TRANSPIRED IN THE LAST 24 HOURS. I HAD PREPARED MYSELF FOR DEATH, NOW I'M LOOKING TOWARD A FUTURE. THEY GAVE ME A 60% CHANCE OF RECOVERY. AND I MUST SAY IT AGAIN. THE HEALTH CARE DISTRICT OF FLORIDA HAD NOTHING TO DO WITH THIS. IT WAS JUST "A FEW GOOD MEN" (DR's) WHO SAW ME BEGGING FOR MY LIFE ON TV.
NO HUMAN BEING SHOULD HAVE TO BE PUT THROUGH THIS! NOT IN THE UNITED STATES FOR SURE!!

Petey,
I am so happy to read this! Please know that while I don't have the words to tell you, my heart is full of thoughts for you.
Stay strong! and God Bless.
Donna

Petey !!

OMG I am soooooooo HAPPY !!! See what a little persaverance can do for you ! WOHOOOOOOOOOO>>>>>> SO SO HAPPY !

Shar

Petey,

So glad to hear things have changed !

There is so much that you have to offer to others and your family. Never ever give up!

So glad the treatments start soon. We will all be thinking of you. SO Happy about all of this for you!!

Take care,
Diane

Petey, I am so HAPPY to hear your good news! Way to go!!!!!!!!!!!keep us posted please....Carol

Petey, I'm glad your treatment dilemma has finally resolved itself. Now you have to get ready for the treatment, but that will probably feel like a relief after wondering if you would be able to get treatment at all!

Nelie

Thank You Nelie
It's been a heck of a ride. Not wanting treatment at the beginning (to horrific). Then to be convinced to get it. Then fight to get it. Then give up hope because you can't get it. Then start preparing for the end. Then get a phone call saying someone will help you, after having told many, and truely convinced myself, that I had exausted all possibilities and that there would no help. I may need a shrink before it's over. My favorite smilie "eek" is a good visual of what I look like!

Petey,

I am glad to see you are moving forward with the treatments... Your family will be there for you every step of the way.

Keep us posted.

Paul

That Is Good news! I am so pleased for you Petey! If your better half needs a shoulder, I am only a quick phone call away, or a trip down 95.
God bless

Sammie