Well thank you for the advise, but I must say that I applied about 3 weeks ago at the Glens Falls office and they were unbelievably nice. When I applied there was a fresh Total Laryngectomy patient in front of her. The paper work consisted of Birth certificate, DD-214 and the bills for my surgery and SS card etc. I also have had a big day today. It seems that I was approved for Medicade and the county paid for all of my bills from March untill now. I also got a car dealer to evaluate my truck and he said $5500 to $5800 on a trade in. I brought that in to my case worker and she said it was good. So I might get that $320 a month. Combine that with food stamps and I might make it untill SS comes through. It is a big if but I am hoping. My question was about SSD, isn't that supposed to be a safety net? I have not been contacted by anyone yet. Well anyway I feel very fortunate to be treated so well by my county. They are good people and I know there are guide lines and rules to follow but the people are so nice. With my military experience and handicap I want to get a job with the county so I can give back to the people who gave so much to me. Kind of corny but that's how I feel. I figure I can work in about a year, maybe sooner. By the way When I went to Radiation today I met my new RO, and he thought that in addition to agressive radiation that I should have agressive Chemo. He made an appointment for tommorrow with an Oncologist. I am scared to death! I have heard alot of stories about Chemo but I thought I was dodging a bullet. Radiation and Chemo at the same time really scares me.

Dont let it scare you Tony be grateful that they are throwing the whole works at your cancer.i often wonder if things would have been different for Robin if he had had chemo first and then surgery and radiation,but it was never offered.So just take everything you are given in the knowledge that the doctors are giving this thing their best shot

Hello Everyone, Well I made through the third treatment and went to the oncologist. He want to put me on 3 treatments of Cisplatin. He says it will amplify the effects of the Radiation and it could get bad (the side effects), He is going to insert a cathader under my skin to a vien near my heart. Does anyone know about this? I scares me, I guess I'm worried about damage to the vien and the whole thing just creeps me out. I agreed to do the Chemo and Radiation because that is the path to remission. Although I am frightened that I might get sick and lose control of my situation. Even though I don't have any control now, I have the illusion of control. The PET scan gave me hope and therfore I believed that it was almost over. Now I feel like it never will be over. It has been the year from hell. I am going to be as positive as I can but it's getting harder to fake it when I feel down. See you, Tony

Dear Tony, sorry, but I had a laugh at your "having the illusion of control" remark. Hate to tell you, but when fighting cancer,what you control is about at 10 to 15 % of what is going on and the rest is up for grabs. :rolleyes: The more you know, the better prepared you are- BUT you will never know more that your treatment team and thus must place yourself in their hands at some point. Most folks here have done chemo and rad concurrently. Not a picnic, but lots of success stories. The catheter he is referring to is a PORT. It is a small tube placed under your skin that allows quick and almost painless access for chemo infusions, IV fluids, pain meds., etc. Many here have had one, and it is a very effecient way to get the above into your body. Without a port, you get to endure needles into veins over and over again. Don't worry about the port. Glad to hear you have made progress with financial stuff. STay strong and keep on figting. Amy in the Ozarks

Amy, You always know what to say! Thank you. I have something to say. I just read a post about making a chose between Rad/Cemo or surgery. I wrote a big reply and then after thinking about it, I erased it all. I can't even advise anyone about what I concider life and death topics. Amy you always know what to say without going too far. I would say find a doctor you feel good about and trust them. That is what I'm doing and I'm still here. Tony

Keep going, Tony - you've made some good decisions and it sounds like you have a good team of doctors helping you. Just the progress you've made on the financial stuff - which is one of the most difficult to accomplish - is great! This cancer fight is bound to make anyone feel down, and you should probably let your doctors know about this so they can prescribe something if they feel it is necessary. Some of the medications for depression take a while to kick in and have an effect so it's better to be prepared and on top of the situation. Tony - the "illusion of control" is good! Faking it until the real feeling comes back is OK. Visualizing a good outcome is a plus. Even the smallest amount of control is progress and cause for celebration and you probably have more control than you think. There is a line from the book "Tuesdays at Maury's" where the elderly, very ill professor is asked by his former student how he is doing, and he replies "I can still wipe my own butt". I have that line, in very small print, posted above the toilet paper in my bathroom, to remind me every day that I am still in control of a lot of things.

Dear Every one, I have the day off and I find myself stressed out as usual. If I don't have something to take my mind off things, I stress. I bought a bottle of pedialite and some biotine an dsome bananas.I don't know what to expect when I get Chemo. Any suggestions are welcome. I have been putting aloe on my neck every day but I know whats coming. After 3 treatment(RAD) I can taste that metal already. The last time it took a couple of weeks. I have been reading all about the side effects of Chemo and they are so vague about it, I should say generalized. Do you definetly lose your hair? I read on one web site that cisplantin didn't cause this. I almost would trade a day off for a day to come off the end. I also read some statistics which are very confusing. They call my stage IV because it went from my vocal chord to the cartlidge(Adams apple) but it apparently did not go anywhere else. I wish I could talk to anyone that had this happen to them. It iks not as common as you would think. I have heard from a couple of people that had Total Laryngectomies but none that had vocal chord cancer. They always talk about 2 yrs and 5 yrs when they talk about survival or remission. I guess these are milestones. When do I start to count because my cancer is not seen on a PET scan. Do I count from my surgery or when treatment is done? I feel strange asking these questions here, but these are driving me a little nuts. Have a nice day! Tony

Hi Tony,
I can empathise with your frustrations. It seems we'll never get ALL of our questions answered - perhaps because no one has ALL the answers. As for Cisplatin & hair loss - not everyone will lose their hair. It depends on the number of cycles & the dose. I had 6 cycles of high dose - once every 3 weeks. & my hair began to thin on the 5th cycle, thinned some more on the 6th cycle & i lost everything from the ears down from R/T. But we're all different and react in differet ways. Thats why you'll never get a definitive answer to what you'll experience and feel.
Over here they start counting the mile stones from when you finnish treatment. The C.T. scan i had after my 3rd chemo cycle showed no VISIBLE signs of cancer - yet i still had 3 more cycles anmd 6 & half weeks of R/T. & only then could the doctors say i was in remission. & then of course we have regular check ups etc.
I think it's healthy to want to know whats going on with your body. I did soooo much research - and then wished i hadn't! I came to the conclusion i'm not a statistic - i'm an individual. & i guess what will be will be. But i still wanted to know everything!
Good luck with the rest of your treatment!
Michelle

Tony, reading your last post triggered a long lost memory of some advice my [lawyer] father gave me many years ago which was reiterated by Brian Hill to me not so long ago. The advice was that we should all, when we have reached a certain age, have a plan, a will, some good documentaltion, for how our final affairs should be handled. Once we have taken care of that, we can proceed with our lives without that worry.I would implore you to STOP reading about statistics unless it appeals to you to be one. You are you! Your reactions to chemo will be your own and you will get lots of good help here on how to deal with it. As far as milestones along this road- it occurs to me that everyday I wake up and get out of bed to greet the day is a milestone- a good one- stop driving yourself nuts- you have better things to do. Amy in the Ozarks

Thanks Amy and Michelle, your words comfort me more than you know. I guess I'm trying to justify my decision to have Rad/Chemo without any visible. My friends are asking me whats up and I don't have any answers. The doc said something like adding Chemo decreased recurrance like 29%. I tried to find that and ended up spinning around from one website to another. I know it is not very zen like, but it takes work and studying to achieve a state where you can be happy all the time. As my father used to say, eat eat, you need energy to worry!