I'm HOME!!!!!!!

HAPPY 4th to all.

I just got home around 4:00 pm, and went STRAIGHT to sleep for 5 hours.

Then had a light pasta dinner with nutrition shake.

Pain is currently a 3 under management with alternating doses of 250 mg Naproxym, then 2 hours later Tylenol 3 w/Codene, then 2 hours later Naproxym, etc...Staying ahead of the "pain curve" and GLAD to be home again! (Even if it was a 4 hour nausiating car ride!;P

Have a great night all...

Hey, Michael!

Good that you are home and healing. You will feel better every single day, guaranteed. Particularly your throat. Neck swelling will decrease pretty quickly too -- at least mine did. But kick back for awhile. Eat a lot of ice cream, which will go down well, and also put on some weight, which you will lose when you do rad. I used the in between time to eat anything I wanted, and as much of it as I wanted, with no guilt. Cheesecake figured in there prominently, and lots and lots of chocolate.

Anyway, so glad you are home where you will feel much, much better.

Welcome home Michael and I second what Joanna said about eating WHATEVER you want with no guilt.

Happy to see you back Michael and feeling fairly well. Get plenty of rest and eat lots of yummies before radiation begins.

Blessings and healing,
Barbara~

Welcome home Michael

You have done well - pamper yourself and allow your body to recover. You will need all your physical and mental strength in the coming weeks as well as your wonderful quirky sense of humour.

Love to you and Seth from Helen

Right now I can barely fit anything larger than a pencil eraser in my mouth due to the opening constriction and pain...But, I believe each day will continue to see improvement.

Can't wait until I can down a slice of Dolche de Leche cheesecake!!

Until then, I'll settle for water since I need it so badly.

My surgeon just called from his cell to let me know that he still doesn't have path results (UUgh!).

He said they had a change of guard on July 1st and with the holiday it may be a few days or early next week (Huh!?)

Anyway, he said that I am DONE with surgery basically and the only thing we need the path for is to determine radiation/chemo or one or the other individually, etc.

I am inclined to do both (radiation and neo-adjuctive therapies {eg: Erbitux}) regardless of the Path reports.

So, at least he called me.

He said the pathology will tell us whether there was something something cell encapsulation, something facial or nerve involvement something something, and one other thing, maybe "Grade" of cells?

I dunno.

He said he is sure we got a 1mm margin clean, and that's what matters.

Ok, no real news, but thought I'd give everyone the latest. I hoping for all good news, ie: only one or two nodes really involved, no other spread, low grade (non-agressive), etc.

Yeah Michael! Glad you are home.This sounds like an echo but-- please eat, sleep and eat some more. This is REALLY IMPORTANT. Amy

Hiya Amy..!

I am concentrating MORE on drinking fluids to avoid dehyrdration.

What nobody on here knows is that I am about 60 + pounds overweight, so I am only concentrating on fluids and nutritional suppliment drinks.

Oh, and I sleep great! Between the 7 to 8 pain scale hits every two hours...I take meds every two hours, so I wake up a few times mid-night...no biggie since I lounge around all day too! :-)

I'm lucky to still have both my parents with me and Seth through all of this. But, I am sending them home tomorrow... They have been at my side almost every minute since Diagnosis, and I think THEY need a break, not to mention their businesses need them!

Seth is really working hard to take care of anything I need. He feeds me ice chips one at a time at 3:00 AM when the pain hits an 8.

By the way, ice chips ::: ICE CHIPS ::: I know it sounds polly ana, but they really help (me anyway) to dull an 8 or 9 down to a 6.5 or 7, until I can take another med, etc.

Speaking of weird treatments, today I got one of those "Mouth Guards" you can pickup at any drug store and "custom mold" it to your teeth. It helps tremendously!!! I realized that as the pain approaches a 6+ it has this cascade effect...I grind my teeth together reflexivly from the pain, which cuts into the tonsil wound more and causes more pain, which makes me bite down more...you get the point. Anyway, this is especially bad while sleeping when I'm not able to make a concious effort not to grind. So, this little $ 20 gadget that I had to put in boiling water to fit my teeth saves me some pain. Just wanted to mention it in case someone can benefit from this info.

Remember to keep things that go into your mouth as steril as possible to reduce infection, swelling and inflamation.

I am starting on barley green and fresh carrott juice tomorrow as just one more added insurance against this beast!

Anything I can do to improve my odds, even just 1%, is worth considering.

Infact, that's really the reason I will starting a new thread under the treatment topic.

I have to begin radiation (and/or chemo) soon and can go anywhere.

I am trying to decide between:

1) Memorial Sloan Kettering (NY)
2) UCSF (San Francisco)
3) MDAnderson (Houston)
4) City of Hope (LA)
5) UCLA (LA)
6) Hoag Cancer Center (Newport)

These are in the order of likely selection. Hoag is 15 minutes from our Laguna home which is why I am considering it, plus they brag about a HUGE survival rate for cancers in general, not too much experience with SCC (H&N) though.

LA is about an hour from our Laguna home.

SF is about 3 hours from our lodge in Mendocino.

Another consideration is that only 4, 5 & 6 have the new TomoTherapy which is what I am going to try to use.

http://www.tomotherapy.com/company/comp_customers.html

Also, Stanford has this new contraption...

http://www.stanfordhospital.com/clinicsmedServices/COE/cyberknife/ckHome.html

Who knows!!??

We have made arrangements to be away from the resort for 6 to 8 weeks as needed, checking back as often as we can, both of us on weekends the first couple of weeks, then Seth alone a few times.

My folks live in the Laguna house, lot's a friends, family, support and familiarity (freeways, etc). Room for our dog (Zach the 100# black lab moose!), our room is there just like we left it 6 months ago, all very nice and comfortable.

BUT, I want to make the smartest decision for my long term survival, so if that mean's moving to a 2 star motel in 105 degree, 100% humidity HOUSTON for 2 months, let's do it!

Can you guys help me decide over the next couple of weeks?

I want to start to make plans now.

I have read all the reports about using a CCC or at least a CC. I know the statistics out there are hard to follow.

ANY advice or testimonials are appreciated!

Welcome home,

I know the feeling. We all do. Anything is better than the hospital.

I hope you feel better and better every day.

I haven't been a member of this forum for too long, but you have set the record for the most posts in any one thread that I've seen. 5 pages and going strong. You have certainly struck a soft spot in all our hearts.

We all care for you and wish you a speedy return to normal every day living.

Jerry