Tony, what did they decide on the chemo? Are you going to be doing that jointly with the radiation?

Wishing you the best,

Everyone, I use that term to save space! I decided to do the Radiation after all. My doctor (the Surgeon) and the Radiation doctor were convincing enough. I have researched it and it is common practice even though I wondered how effective. I went last week to start and they fitted me with the mask(the worst part for me) and ran a CT. I was in the mask for what seemed like a half hour. Then they tatooed a dot on my chest. It will be IMRT and it takes a long time to do the mapping. From what I know there are up to 48 Lymph Nodes. The machine is 1 year old and they brought me in there and showed it to me. They are going to supply music and try to make itgo by quickly,but the machine moves alot I guess. This not like my first time. The first time was very focused on my throat. He also said he was going to give me 60 instead of 70 McCi. I know I've got the Acronym wrong. He said I might not have the harsh side effects I had the first time, but keep the feeding tube just in case. I have already had it since the first week of June. It seems like a long time ago that I almost died but I am growing more used to having a hole in my neck and talking with an electro-larynx. The feeding tube is just an inconvience. I start Radiation this Wednsday and Tuesday I have to go in to see if it is right. So I'm hoping that the swelling doesn't freak the Nodes out and result in more Cancer. No Chemo was recommended, thank the Lord. I can thank the Lord and still be a Buddhist! Don't ask! That is a longer story. Thank you for asking and I get strength from all of you.

Tony - it is so great to see how you are taking charge and staying so positive! And so encouraging to the rest of us. I love your comment about being able to thank the Lord and still be a Buddhist! (my son is also a Buddhist after many years of an association with the Lord) Any help, healing or inspiration - no matter where it comes from - is a good thing in my book!

So Anne-Marie, thank you for the inspiration! I really appreciate it. Tommorrow I start my treatment and I am relieved to start. Thne sooner I start the sooner I will be done with it. How is your son doing? Did they remove the lymph nodes or just Radiate them? The technicians told me that mine would eventually work again. I still don't understand if Rads kill only cancer or they take out good and bad. See you

Tony - I am so glad you are going ahead with the treatment. It can be a rough road but you have lots of help on this site so keep in touch as you get further in the treatment. You will find lots of good ideas to be able to handle anything that comes along. Just knowing what to expect is a big plus. My son did have the 48 lymph nodes removed plus the radiation. After surgery when they took a look at them, and they were found to be all clear. He is about 7 1/2 months post treatment and really doing great. His weight gain is slow but he was a few lbs. over when he started. He can taste everything altho' not with the same intensity and he stays pretty close to his water bottle. When I cook for him I have to make sure it's something "juicy" or accompanied by a sauce or gravy. I can say, now - and I am sure he would agree - that life is good!

Well I made it through the first treatment and I can say that this is totally different. They have these Jaws on the culomator and it is computer controlled. It actually is programed to go around the area of the first radiation I had in Oct-Nov 06. The treatment is quite a bit longer as far as time, it shots 4 times on one side then 4 times on the other side. They told me it wuld have very little strength hitting my jaw, which is important to me. My sister had all her teeth pulled on Friday for dentures, and I don't care to go through that. She did not have cancer, just bad teeth. I have great teeth luckily. Anyway the whole thing took about 8 minutes. My last experience took only about 2 minutes. My appitite is healthy and I feel great,I hope this continues. A volunteer at the hospital(whom is in the support group I joined) is really great and the technician trish, is absolutely fantastic. Apparently there are programs that help you out if you need help finantialy. She has already signed me up for help with travel. I have to do something because between now and when social security kicks in, I have no income and in about 2 weeks I will be out of money. I can't work and welfare says I can't have benefits because my 10 yr old truck is too valueable. I did get food stamps though, which will help. My friends and family will help but I can't expect them to carry me. Oh well, maybe I should post to the in treatment forum. See you later all, Tony

PS I was wondering if anyone has any experience with Social Security disability. I realize that there is a forum chapter for this but I figured I'd ask one question! I feel like I know everyone here.

Tony: I retired from managing a law firm for about 14 years...we did SSD claims...what are your specific questions? I'll try to assist you, if possible, keeping in mind that I am NOT an attorney and am prohibited from giving legal advise; However, I'll be glad to share general knowledge.....Hey, maybe you can answer questions we have regarding IMRT treatments!

Tony,
most SSDI or SSI claims for cancer are based on cancer fatigue. Your age may work against you though, The SS people don't like to pay out for people under 50. You should also be fully vested in the program. Make an appointment at your local SS office and bring copies of ALL of your medical records with you and a certified copy of your birth certificate. They will want scan reports, lab tests, diagnosis, etc. In California anyway, they have a panel of state doctors look it over and approve the claim. If your claim is approved then there is a 6 month waiting period (which is retroactive to the date of disability) and they start to pay on the 7th month.

Here is a link to the SS disability page - be very careful to provide EXACTLY what they are asking for http://www.ssa.gov/d&s1.htm

I did my own claim and it was approved in 2 weeks. I was 55 at the time. I am still collecting full benefits 4 years later and they will run out next year. I did a 9 month, full time "trial back to work" period (during which you can make as much money as you can with no penalties). They allow for an additional 36 months of benefits after that, conditional on your income. If you are self employed they only consider your net. If you work and get a W2 then they consider your gross. After 2 years you are automatically eligible for Medicare as well. Being in regulatory affairs and working with government agencies for many years helped a lot also.

It sounds to me like your eligibilty date (based on when you started Tx 9/06) was in March 07 so you should get a retroactive check for 4-5 months if they approve your claim.

You may need a lawyer but really it's a fairly straight forward process if you comply meticulously with the documentation requirements and have enough paid into the system.

Tony,

I have just been awarded my disability benefits from SSA. Gary is as usual very correct in stating there is no room for error in providing every document that they request in a very timely manner. My personal experience was that they see us as being special cases and will expedite if you show humility and a willingness to comply to their process. You will most likely be interviewed by a local state agency to facilitate a prompt determination. This will likely include a neutral agency or approved medical company comprising of a shrink and medical doctor. I also highly recommend that you notify your county and apply right away for Medicaid assistance. This will cover both meds and treatments. Seriously consider transferring ownership of the truck to your sister if you have to, but your medical expenses for proper care is your lifeline. It seems silly that a 10 year old truck is probably the only thing holding you back from aid, but it will. Besides, while you proceed in treatment it is not real smart to be driving while under the influence of heavy pain meds my friend. I personally surrendered my drivers license for now till I am confident I do not pose a risk to myself or others. The process for application for disability was unusually fast, initial application was started in October of '06 and the award was granted in July '07. As Gary stated the first 6 months of eligibility is not paid and the first check is issued on the seventh month. Medicare starts after 24 months. I consider myself incredible fortunate to have been approved on the first try. It is quite common to have to apply not only a second but a third time as well. I would not seek a lawyer at this point unless you are rejected. The local office listed below covers the 12866 area and they will assist you compassionately and thoroughly. Whatever date they select as to when your disability started is the target date your benefit starts. My local office had stated a date much earlier than I would have but when the award was made a different date was used. The official date was still earlier than the one I had felt was correct, which was the day of surgery. This assistance has helped my family and I when we really needed it and I too am looking forward to returning in Sept for my "trial back to work". Please feel free to email me with any questions you might have
SOCIAL SECURITY
530 FRANKLIN STREET
SCHENECTADY, NY 12305
(518) 382-1001
Toll-Free 1-800-772-1213