Chris,

It's great that you have all these people on board as your caregiver. The caregiver is an extremely important role in your battle against this disease, from diagnosis to full recovery. I most strongly recommend your family join this forum as it will glean a lot of information from patients, survivors and caregivers alike. Ask questions. I am a caregiver "newbie" to this forum and believe me, there is valuable info to be had. I've been searching the web, there are blogs and such but this site is in real time 24/7. I'm glad to have found it.

Linda

Chris,

A cheese steak run sounds like a good idea. I have no real favorites, I eat them all. Let me know the next time you plan one and we can meet there.

Just curious if you husband has (had) any relatives in Lower Bucks County. I treated a very nice elderly couple named Monkhouse many years ago. Wife's name was Virginia(I think) Seems like an uncommon name and you never know. It's a small world.

Hi Chris and welcome. Sorry you have to be here but you found a GREAT place for support and information. I live in Delaware County in the Philly Burbs. Make a list of all your questions before you see the different doctors. Being the caregiver I tried to write down things as John would bring them up so we could talk to the doctors about them. It gets very overwheming when you have so many different doctors and so much information to take in. You sound like you have a positive attitude going into all this. Feel free to post any and all questions. Glad to hear you are getting the PEG. Even with it in my husband lost 30 lbs. I really don't know how he would have made it through without it.

Chris

Welcome to the best oral cancer support group in the World. You will note that many of us have gravitated to a specific piece of advice to share with newcomers. I ranged all over the place but discovered that many other posters conveyed a particular message so well that I am now on a thyroid kick. Here is my canned piece of advice:
[quote]The best remedy for worry is to take remedial ACTION. I have a suggestion that may require you to PUSH the doctors, but you will be glad you did. Insist on a TSH level blood test for his thyroid so you have a pre-TX baseline on what is normal. Radiation very often damages the thyroid and leaves the patient cold and weak yet because there is controversy over what is the right TSH level with labs having a 5.5, a 4.5 or the most advanced ones in tune with the 21st Century, 3.0 as the highest acceptable level, it is very very hard to get a doctor to prescribe thyroid medication without pre TX baseline. I am a personal example since before TX, I had a TSH of 1.6 and after TX it shot up to 4.3 but no doctor would help me these last two years until I discovered blood tests done by a cardiologist that I got the results from the day after finding out I had cancer so I had paid no attention to the 1.6 TSH. With that, I have finally been started on one little pill that my endocrinologist thinks will bring back both energy and warmth.
I hope you never need the results of this pre TX test-
Disclaimer: I have a degree of Doctor of Law -NOT Medicine[/quote]

Hi Chris,

My husband is being treated at Penn and we are very happy with the care. Communication among the various caregivers is so important. We really like the team approach. Highly recommend.

We love driving out into the country and have been in Hanover. Our son's friend's parents own a wonderful diner there.

The support on this website is great. You can post your darkest fears, too. People here understand.

Charm,
I like your advice about the baseline TSH. Very smart. Good suggestion for anyone. I had my own done recently and happy to have it documented.

Anita

CHARM - Thanks again for the tip on the THC - will discuss with my RO on Wednesday.

I went for the dental exam today - will need to have a molar extracted tomorrow, along with a cleaning. They also took impressions today for flouride trays, which should be ready when I go back tomorrow. I meet with my RO on Wednesday to schedule pre-treatment appts. I guess the ball is rolling and will probably start TX in @ 2 weeks or so. Getting real nervous about all of this - I put on a brave face for family - but you all know how terrified I am inside. The chemo doc prescribed an anti-anxiety pill for me - I wasn't going to get it filled, but am reconsidering!

Thanks again for your support.

Anita - What's the name of your son's friend's parents' diner in Hanover? My husband eats breakfast every Saturday morning at the Victory Diner while I'm at work - it's a real family-feeling restaurant and they all love him there-if he misses a Saturday, they worry @ him!

So - I only had to have one molar extracted on Tuesday. My dentist had the trays made for fluoride treatment each night and gave me fluoride toothpaste and then pronounced my dental condition stable and ready for treatment. So we met with the RO on Wednesday and yesterday I had my planning session.

Thursday I returned to work for the first time in 5 weeks. It was a very emotional day with me as I met with my staff and shared my cancer diagnosis (all but a few thought I was just home, recovery from 2 surgeries) - I am very close with most of my employees so - lots of tears followed by lots of hugs! I explained that I would probably be in-and-out for about 2-4 weeks once treatment begins, until I can no longer make the commute to the office from PA to Baltimore. Thereafter, I will be working from my computer at home and taking conference calls from home until I can't do that either. I explained that after treatment, it's a long healing process and I might not be back until sometime early summer.

Yesterday, I went to the Cancer Center with my best girl friend and had 'the mask' made, got the CT scan, etc. It did not bother me in the least to be bolted down to the table for @25 minutes while they took down all the necessary measurements, so I feel much better about how the radiation treatments will be when they start. The planning session took about 2 hours and afterward my girlfriend and I shopped our way all over town and had lunch, and then back to my house for more hours of 'girl talk' until my husband got home. It actually was a wonderful day with my very dear friend, considering the source of our get-together.

So, it looks like, if they can do all the necessary planning, and get with my chemo onc, that my first radiation and chemo treatment will be on Monday 2/1/10. I will be getting the PEG on Friday 1/29. They will keep me overnight to ensure there are no complications and I will go home on Saturday.

I can't thank you all enough for sharing your experiences on this site - although I am still scared about starting treatment, I feel much better, armed with information, and knowing at least in general, what lies ahead.

BTW - I finally did get my official dx: Stage 4, T1N2bM0

CHARM - I did speak to my RO about the THS and he said he is very aware and will be monitoring throughout treatment so that he can prescribe the appropriate medication if needed.

Hi, Chris,

Victory Diner--that's the one! My son just told me that the Smith's sold it a few years ago. They had the best cakes! We went there about 8 years ago on one of our autumn drives. Very good.

Anita

Hi Chris and welcome to OCF. I see you have already "met" some of our resident experts and supporters:) I have only been treated surgically so I'm afraid I cannot offer any information on what you are about to go through. As you can see, there are many here who can help you though.

Your posts sounds very confident and you are ready to take this thing on! That is wonderful...you sound like a very strong woman. With that kind of attitude and the support here you will be just fine.

Chris

For what it's worth, I was able to do a combination of working at home on my laptop with a secure VPN (virtual private network) set up (ironically, I had been the major player in getting it set up for top executives prior to finding out I had Cancer). Of course I was usually replying to e-mails from 2am to 4am when I could not sleep, but I did do all the conference calls during the daytime. I alternated work days with Sick leave as needed and it worked out really well for me for those four months. So your plan sounds doable (A month after the cancer TX was over however, I retired as I found out actually being there physically was too taxing plus psychologically I was unwilling to spend what was left of my life in a job receiving only complaints for successfully resolving what all others had failed at doing -then getting similar assignments that required the same combative & aggressive measures to succeed. )
You can do this.
Charm