Daisy, I just about changed my name and left town rather than have a PEG installed, but it turned out that an IV was inserted and I remembered nothing of the procedure. Just a couple of weeks ago I had a combination colonoscopy (about which I felt the same as with the PEG) and upper endoscopy, and was given an IV and woke up and it was done. In both cases, I woke up easily and clear headed. Surely the same can be done for your husband. I do not know the name of the short-lasting anesthetic used, but it must be very common. If you describe the effects I just mentioned, I am sure the doctor will know what you want. Tell your husband that I understand!

Daisy,
I can relate to your husbands fears about needles. I did discover that most of the fear was mental after going through chemo, lots of bloodtests, etc. That didn't stop me from getting a presciption for Zanax for anxiety however. I took them all through treatment. There is also no reason why they can't give him something to take for pain before he leaves the house. Before I would leave the house for bloodwork I would pop a Vicodin (at least in the beginning) I soon found that I didn't really need them. You can also ask for a pediatric needle which you can barely feel. Some persons who draw blood are much better than others and I have had many blood tests that I barely felt. I put off going to the ENT for months because I was afraid of a needle procedure to drain (what I thought) was a peritonsillar abcess. Then I'm told it's cancer. The delay probably cost me a stage or two.

The port is probably a good idea. It will make it far more comfortable to get the chemo and with the lung node issue, he may have a more extensive chemo protocol than normal.

You may need meds for anxiety as well. As you are finding out, the carsgiving/support aspect of this is very difficult as well.

It sounds to me like he will be fine - he needs to process the whole mess. Being told that you have a life threatening disease is quite a shock. Add to that the need to make vital decisions rapidly, unrealistic fears and expectations and it can be a very difficult time - especially pre-treatment. It also changes something inside of you forever. It's been siad that "you can be cancer free but you are never free from cancer". He is entitled to his feelings which can ne very scary and also very dynamic in the early phases.If he is a cop then he is used to facing danger and he just needs to get into the right zone. It really doesn't take a lot of courage to fight this. The real trick to it is to take it one day at a time and stay in the moment rather than freaking out over what might or may not be, in the future. Once they get a treatment plan worked out things will get better I promise you.

Daisy, I can also totally relate to the fear of needles! Although, as Gary has said, he may find that changes by the time he's been through all this. The port will really help him not have to deal with needles very much during treatment (I had a port too) but also most oncology nurses are very very good with needles. I just went for a followup checkup and blood test to my medical oncologist and the nurse was so good with the needle I barely FELT it!

By all means ask for whatever meds he needs to make this more bearable. I had Ativan to take all through rad and chemo and, although I didn't take it all the time, it definitely helped me get through things (it also helps control nausea which I also needed all the help I could get with)! My medical oncologist's office was really good at presribing whatever was needed for pain and anxiety. if I had whined louder they would have geiven me even more serious drugs but I had this thing about wanting to be as clear-headed as possible which, in retrospect, was silly. He should find he's able to get some real help with this if he talks about it with his medical oncologist. He can do this. You can too.

Nelie

I actually gave the MO a shopping list of drugs (which he gave me anything I wanted) so I would have them on hand and ready to go when I needed them - everything from pain meds, anti-anxiety, infection/thrush control, anti-emetics, etc. I really didn't want to have to go to emergency if something came up on the weekend or after hours.

I can vouch for what Nelie says about the oncology nurses - they are pros. I hardly even felt the IV's and I didn't have a port.

After a very short you realize your life depends on the needles and you just accept it - you don't have to like it! Almost without exception the people I met were pretty compassionate about that so it never reached the level that my fears gave it.

Daisy,
I haven't heard anyone comment on the center you mentioned, but just make sure it is a comprehensive cancer center. I truly feel my brother would be alive today if we had gotten him into MD Anderson to start with. Instead we went with a hospital in a large city about 3 hours from us. They had a cancer division, but little experience with oral cancer we later found out. Once he started treatments there we had to wait until they were completed to get into MD Anderson. My brother first noticed the sore on his tongue in Aug. 2004 and did not tell us about it until April 2005 when we insisted he go to the doctor. His first biopsy came back negative - even though you could see the cancer in his mouth. The Dr. said, "This isn't right," and they had to do a second needle biopsy of the tongue. This almost killed my brother. I don't know about everyone else, but I think this was the MOST painful part of all the procedures and my brother had an extremely high pain tolerance. Anyway, he had to have his teeth removed and these doctors didn't even start treatments until late SEPTEMBER 2005. That was 5 MONTHS after diagnosis. It wasn't until the last day of JANUARY 2006 we were able to get him to MD Anderson for surgery. That was 9 MONTHS after his diagnosis and 17 MONTHS after he first noticed something. The moral of this story? DON'T LET THE DOCTORS DRAG THEIR FEET. They wrote my brother off as soon as they saw he was stage 4 with a 4cm growth and activity in the lymph nodes. They said surgery was impossible. They were WRONG. They said nothing could be done for him. They were WRONG. By the time we had the courage to buck the system and figure out they were just buying time waiting for him to die, it was too late. They didn't even tell him he was terminal. He was in his hosptial room in September, asking me about homes for sell in the country. He wanted to start looking and find his family a little place. He wanted me to start calling people (the nurse practictioner had told me earlier that day he just had 5 months to live.) I had to be the one to tell him they had given him a terminal diagnosis because I felt he had the right to know. His doctor and nurse practitioner were very angry with me. I still do not understand this and resent being the messenger. Please find a medical team who will put your husband FIRST and make sure surgery is not his best option. I can't hardly believe surgery can't be done. My brother's case was extremely advanced and the cancer had wrapped around the jaw bone and more. He had 90% of his tongue removed, the floor of his mouth, upper and lower jaw, part of his throat and lymph nodes - all at MD Anderson in a last ditch effort to save him - he had already had his lifetime max of radiation. I've always thought if he had had the option of surgery first our story might have had a different ending. I understand every case is different, just make sure you are being given all the options and the best care out there.
God bless and stay strong,
Tonya

Daisy - Ask your docs about "conscious sedation". They give a dose of this drug and the next thing you know, you are in recovery. Its a chemically induced amnesia and its FABULOUS! It is NOT general anesthesia, and has little or no after effects other than drowsy. I had my peg done that way, I had my pic line (port in the arm) done that way. Its the greatest. I had general sedation for the dental work. My teeth were lousy too and all had to be pulled.

Ativan - the drug of choice for scary treatments! Its relatively inocuous, and it really works. Get some. You husband can take them the night before, the morning of, and even right after those procedures. Pop one under the tongue and everything settles right down. I strongly recommend it. Your docs will know of it. Your husband is a brave man for dealing with the cancer. Tell him that for me. Being needle or procedure shy is rational, sane and sensible. Take drugs. Its a slogan I learned in the '60's, but it means a bit more to me now. We are with you both. Be strong. Tom

Daisy --

You are not being disloyal to your doctors if you seek a second opinion on diagnosis and treatment. MD Anderson is considered tops in the country for oncology and it would be well worth the effort it to go to Houston for a consult with them. Living in the east, we went to Memorial Sloan-Kettering for 2nd opinion (with blessing of Hopkins doctor) and were greatly encouraged by their input and the fact that the diagnosis (they re-read the path slides and MRI and CT scans, for example) and suggested course of treatment agreed. They also gave us some insight into an option which had not been discussed with original doctor, but which (when we brought them up later with our MO) was incorporated into Barry's treatment plan.

You might also want to ask about clinical trials of some of the new drugs (e.g. Erbitux, Tarceva) which are not yet approved but which are showing promise in trials for advanced SCC of the head and neck.

This will be a long road but there is hope, do not dispair -- many have come through this and (like Gary) have shown that doctors can certainly be wrong.

We are all pulling for you and your husband!

Gail

Thank all of you for your support and input. I hope you know how much of a comfort and a cheering section you have been. We are still working on getting these pre-treatment procedures completed. He will see the oral surgeon tomorrow for an evaluation and preparation for the removal of his teeth and the doctor who is going to do the lung biopsy was to receive his films for study/prep today. I've discussed a trip to MDA with him, and he is at least keeping that option open should he feel he is not receiving all he should. At this point we/he are very happy with his Radio Oncologist. We still haven't decided on the Medical Oncologist, but have narrowed the list down to a few who work closely on the team with the Rad doc. The Radio Oncologist has a patient advocate who is fantastic at making things happen when others seem to fail.

The ENT who made the original diagnosis may not be involved in his case much longer. Hubby has finally gotten over the almost complete lack of hope this idiot gave him, and is seeing that this is going to be a battle, BUT, it's a battle worth fighting and that he has a chance to win.

The ENT sent out a prescription for Valium yesterday which is what they gave him when he had the PET scan done. I didn't know about the Ativan but will take that up with the doctors asap. He seems to be getting more focused on the beating of this enemy thanks to many of your own stories and some folks in the local area who have undergone this same fight.

I know it's not the place of this forum for discussions of other cancers but I hope you don't mind if I share something else that has hit our family today. My first husband, who is the father of my 16 year old son, and who still remains one of my best friends, was diagnosed today with Non-Hodgkins Lymphoma, I believe it is B-cell. He is set to meet with an oncologist on Friday to arrange more tests to see if there is cancer anywhere else. It was discovered during an eye exam in the form of a tumor under his eyelid. They did the biopsy Monday and got the Pathology report back today. We have hopes that this was discovered early enough and that treatment will be successful. Unless it has spread his chances seem to be pretty good.

My current husband was diagnosed 02/09 and now my ex is diagnosed 02/22. My son already knows about my husband, as with his medications and symptoms, we couldn't hide it, but my ex and I have agreed it is best he not know about his dad, until we have a more definite prognosis. At this point I'm thinking about making a visit to my own doctor for a little sleep help and some stress relief. I'm a strong cookie, but now with two cancer patients and the care of my husband's 88 year old mom who fas fallen victim to multiple TIA's, I starting to think my sanity could use a little boost.

Again thanks to all of you for your advice and support. I'm hoping that some day when we reach the other side of this mountain - I'll be able to provide the strength and hope to others you have so graciously provided to my family. And to those who have offered their personal support, phone numbers, etc. I have passed that information on to him. He says he doesn't feel the need to call yet, but trust me, if he does, I'll give you a quick holler. Thank you for sharing your experience and knowledge. I'll be eternally greatful.

Daisy,
When it rains it pours, doesn't it? Is there anyway you can get assistance with your husband's mother? Other siblings? Home health? The journey you are about to undergo will require more strength than you ever knew you had - you can do it, but you need to reduce ALL the burdens you can as this will take everything you have and then some. I know you probably feel you can handle it all, but as time goes on, please don't feel guilty if you have to let people step in and take on some of the other responsiblities. Please take care of yourself. You're husband will need both his strength and yours for a long time to come.
You don't say what part of Texas you are from. I am in the panhandle. If there is ANYTHING I can do, please let me know.
Tonya