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

Michael,

My mom lives in Malibu and went to UCLA for her chemo and radiation treatments. She had a very good oncologist. I think its wherever you feel the most comfortable. I know for my mom being close to home was very important as towards the end and the first few weeks after treatment ended it got pretty difficult for her and she just wanted the comfort of her own home and bed.

My mom was about 40 pounds overweight when all this started. She never had a feeding tube and had two very major surgeries that involved skin graphs and a trake and then with the radiation and chemo she lost about 60 pounds making her about 20 pounds underweight and quite unhealthy for a period of time. She was hardly getting any nutrition causing her body to start using her muscles to survive. When she finally started putting weight on is when her recovery progress really started to show. Be very careful with your weight loss my mom was really excited to finally fit into a size 5 but the rapid weight loss really had an effect on her overall general health. Now she is at a healthy weight and is starting to have to watch what she eats. My mom took a little longer than most to start feeling better. I really think it had a lot to do with the nutrition thing.

Feel free to contact me if you need anything.

Hugs,
Dani

Glad you are home Michael.

Please don't think of this as some kind of weight control program. If you proceed on to other treatments you will want every pound extra you have.

Take care

Oh, I am not intentionally trying to use this to control my weight, In fact one of the hardest tortures is to see incredible foods I love and knowing I cant swallow them!

Yay! Welcome home Michael. So glad to see you are controlling your pain okay. Makes me MAD they didn't help you control your pain better in the hospital. I was alternating between morphine and liquid Loritab in the hospital and was really amazed the morphine wasn't more effective that it was.

Then, they had me scheduled to stay on all that until I was released from the hospital. I said "But...what are you sending me home with? I want to take what I'm going home with.", and had to wean myself off the other pain killers. Then..would you believe they tried to send me home with pills instead of liquid meds? sheesh.. I was like...okay YOU go through this surgery and then swallow a horse pill. :-)

Anyway, enough of my ranting. I'm so glad you are doing well and able to eat some real food. Will help you keep up your strength before starting the next phase of your treatment. I hope you continue to do so well!

Jennifer

Michael!
You sound so good so soon! I'm glad you are pro-active and took charge even while in the hospital. They say "good patients" have a lower survival rate. Passive is not what we need to be.

I'm going to UCLA tomorrow to talk to a Head/Neck Dr. and I'll let you know what I find there. I searched cancer Dr.'s on the web and then researched their credentials and specialties. I emailed the one I liked best with my short history and asked him to consider me. He wrote right back giving me his private number! I was impressed.
I was treated at USC for years but their cancer department doesn't wow me. My Oregon surgeon strongly recommended UCLA and others have commended it as well so I'm hopeful.

Do watch losing too much weight. Even radiation takes it out of you. I lost 20 pounds just doing that! My Dr. "prescribed" chocolate milkshakes every day. Lots of good calories and easy on the throat. Also Ensure has a great mocha flavor I still crave.

The good news is that you are taking control of your illness and you and Seth have been able to figure out the work issues. You are lucky to have such nice options. Now's the time to start the humor. Read Stuart Smalley books and commit to making yourself laugh. For some weird reason it helps.
Love and hugs!!!!!!
Ali Mae

PS: Loritab is great! It tastes like Midori liquor. I was on it for weeks!

Michael,

Congratulations on being home. I know what the middle of the night pain spikes are like -- I remember them well. I just passed the two year mark on July 1.

I was lucky not to need radiation or chemo so I can't give you advice on that decision, but good luck. I know you'll hear from a lot of people here who can give you direction.

Barb

PS The lodge looks beautiful.

Michael,
I had breast cancer 9 years ago. I had my surgery and treatment out of St. Joseph's in Orange. It was an ok hospital but not great, however I loved my surgeon. For treatment (a mastectomy was my only real option) I went to UCLA for a 2nd opinion and used that oncologist's advice for treatment but did the treatment in Orange.

My neighbor's mother did something similar- got treatment advice from MD Anderson but had a local Dr administer the treatment.

I just had surgery yesterday (left neck lymph node disection and left tonsillectomy, and various small mouth biopies) at HOAG in Newport and thought it was a very nice hospital and was happy with the serivce. My surgeon was Dr. Strelzow who came highly recommended to me by several other Dr.s (my pathologist, Primary care physician, my oncologist, and my son's respiratory specialist, my pediatrician)

No hospital is perfect though and you always have to double check things. I like the oncologist that was recommended to me but since I don't have a diagnosis yet I have not begun to research into treatment.

My point is - find a DR you like and also find the best treatment for you - but having the treatment close to a home is very nice. A four hour drive seems very far.

Good luck!!!!