What you are feeling is very normal. I got my diagnosis just 6 weeks ago and I still have a difficult time. I actually began counseling to help me cope and deal with it. I have not started chemo or rediation and do not know if that is the path we are going to take. We are waiting on a PET scan to find out idf the surgery got it all or not. Once we know that then we will mak our decision. It is okay to cry as this a horrible thing to have. You will be in my prayers.

Dear Jeff,

After I read Vanessa's post, I went back and re-read some of my entries (I haven't re-read a single entry since the dates they were posted). YIKES!! Sorry to have scared the crap out of you!!!!

I can only hope the burn in your arms from holding the 30lbs over your head for 8 hours straight takes your mind off the not so pleasant things you might have read. ;-)

Always remember that everyone's experiences with this stupid, stupid cancer are different. It wasn't bad 24/7. There were good moments and bad moments...and some awful moments. But that was Dan's story. Your story might be entirely different.

There are only a handful of people that I have read about who have not lost more than 10 pounds. Dan lost over 40. By the time his medical team was deliberating if he needed a PEG (that was post treatment)he was in no condition to have another procedure done...and yet he couldn't afford to lose another pound.

While the hospital Dan was treated at was the best in the area, they did not have a tremendous amount of experience with Dan's particular cancer. And, they didn't have ANY prior experience switching a patient over from Cisplatin to Erbitux. My advice would be to get a PEG while you are feeling strong and healthy! If I knew then what I know now I would have demanded one early on!

Because Dan was often dehydrated (partially because of the no PEG situation)and his veins were a little messed up from the chemo...the nurses had a very hard time getting IV's started or blood tests done towards the end of treatment and post treatment.

With the PEG you can get fluids down, much needed calories and the protein needed for healing. It also helps with any medication that is too big or difficult to swallow.

If you have 5 treatments down, you have one week out of the way...you only have 5 1/2 weeks left!! Piece o' cake! :-) Part of the battle is mental, so keep the faith!!!

Great that you are connecting with a behavioral psychiatrist! Spill your guts out and tell her about the crazy woman who scared the crap out of you! ;-)

I'll keep an eye out for your postings...when you are over the hurdle and on the road to recovery, I'll share with you the really, REALLY awful things that occurred during treatment (Kidding, Just Kidding!!!) Apparently, I shared it all in my midnight ramblings on my blog. :-)

You have a good attitude...and a sense of humor...both will serve you well during the weeks ahead.

If you get the PEG before the nuking process screws up your throat, it can be put in by a Gastro-Doc using a endoscope and you can ask for a big bore (20F); if it's put in later by a Radio-Doc, it's more likely to be a smaller (Read clog-prone) 12F or 14F. Doesn't take a plumber to see the advantages of the bigger bore <grinz>.

It was nice to get home from work and see all the replies. I can see how this forum is addictive. I run home and check it before my e-mails?

One issue at hand is the PEG. The medical team really wanted Jeff to try and do it without one. I read on this and other forums that the advice was to get a PEG. Our doctor said take what you read with a grain of salt!
So... we have decided to go with the PEG. Jeff has already lost 6 lbs from the tonsillectomy and is slowly putting the weight back on with lots and lots of ensure. We know that won't last long as the radiation treatments continue. He is already quite slim to begin with.

Margaret, if I do go away post treatment for two days I will get a trusted friend to stay with Jeff. You didn't scare me. Your info was the same as all the experiences we have been reading. What we get is that it is a hard journey, but people get through it.

Vanessa

Hi Vanessa,

I could never interest Dan in going on this forum, but for me it was a life line! I would read him posts occasionally to assure him that what he was experiencing was similar to what others went through. And, I would post his questions...but, to this day he has never gone on this site. I think it's great that you and Jeff are both here!

Sooo glad that Jeff is getting the PEG. I had the same experience as you did when I mentioned to Dan's team that I had read the PEG was important. I know now that we would have had a much easier time if Dan had a PEG. Getting medications down towards the end of treatment was a real process...liquid medicines burned and pills were hard to swallow.

Good that you have someone who could stay with Jeff if you do go away. There are a few people who got through treatment and recovery without a caregiver and it amazes me. Dan would not have been able to go it alone...and, he'd be the first to admit that.

Glad the blog didn't scare you...it was an odd experience for me to go back and read some of those old posts. Fortunately, those are now distant memories...as this journey will be for you in time to come. :-)

PEG vs No PEG debates abound, I lost 70lbs with a peg in, I couldn't imagine what I would have lost without it or if I would even be here.

I just had my peg removed a few weeks ago and to be honest I feel naked without it...although I look better naked without it but that's too much information :P

Congratulations on having your PEG removed! Our doctor said only 50% of her patients get the PEG. Who are these people? I know a few that have done it but more that have trouble keeping weight at a acceptable level. If my husband lost 20 lbs it would be too much. He is already down 10lbs from the surgery and only 6 days into the radiation and that is with many many ensures and lots of fatty foods to try and fatten him up!. He never could gain weight. I can't imagine losing 70lbs!

Vanessa

Vanessa,

Consider Carnation Instant Breakfast VHC. It has 560 cals in the same size can as Ensure so by drinking the same number of cans as he does now, he will get many more calories. As time goes on this will be critical. I didn't have the Peg and I didn't have anything to loose but I ended up loosing 30% of my total body weight. I looked and felt like death but I credit the VHC and 3000 calories a day (only 6 cans) for pulling me out of my tunnel.

I looked like a blue gill that had been out of water for 2 weeks with my 70 lb loss. Got back up to 185 and then an aneurysm reocurred which is a 1 in a million deal, Right back down to 160 and not up to 167 and ready for the other half of this stinkin aneurysm repair, He couldn't do the whole surgery because he thought I would die or he would kill me. One day after this is over Take a collection and buy me some teeth will you all? LOLat least for cosmetic reasons if not to eat.

The "instant carnation" seems to be the key to gaining weight. We will go buy it first thing tomorrow! Thanks for the tip.

Vanessa (Watt's wife)