Michael,
I just visited UCLA and I loved it! Very up to date facility, extremely professional staff and warmth all over the place. The "waiting room" in the oncology area was huge and furnished as darling conversation areas with stuffed couches and end tables. Every Dr. had a support staff that came out and greeted you personally before taking you back. I watched others coming back while sitting in my room and each was accompanied by a positive, very personal nurse who was very aware of the person's status. I had a nurse take all of my records back before the appointment. Then met with an assistant Dr. who'd obviously read them extensively in the 1/2 hour wait. He knew my medical history from 1970! The big man himself, an expert in head/neck oncology, then came in and discussed every detail of the disease with me. And answered every silly question we asked over and over again. No sense of hurry. The place is awesome and worth a visit. When involved in support groups and even at USC medical ,people would tell me of UCLA success stories. I can see why. These guys are state of the art.
You sound so good for only 7 days. I still had all my feeding tubes then and couldn't talk yet. You are healing wonderfully. I know I had perineural in 1993 and it's never advanced in the brain nerves beyond what it was then. I didn't have positive margins in '93 and so they did rads. I had 21 nodes removed and a few were malignant. 2 new malignant ones have just shown up in the opposite side of my neck so it's creeping. But ACC is relentless. The Lung tumors are there and multiplying. But they can't do anything about any of them. The Dr. said to go enjoy life, have wine and dance and not worry. I'm looking to house swap with someone in Italy.
Hugs and strength. You are doing better then you know.

Ali Mae

Michael, you are my inspiration. I logged on today because I was feeling sorry for myself, sitting with a very painful mouthful of stitches and no answers. I wish that I had something inspiring or uplifting to say but nothing that I can think of would come near the mark. Your courage inspires me. It may not seem like it at the moment, but simply logging on and sharing is a big step in my books. I am thinking of you and praying for you and your family and also for your doctors that they may be guided with wisdom.

Oceanangel:

Thanks for the comments and you prayers!

Hope you are feeling better by now.

I just got settled in my hotel room in HOUSTON!

My flight got redirected to Austin first due to Dennis Storms here in Houston...

My appt is at 7:00 AM tomorrow!

I can't wait to meet the team at the world- reknowned(sp?) MD ANDERSON CANCER CENTER --

I'll be posting here right after tomorrow and let you all know what I think...

I hope to meet an Oncologist and Radiation Oncologists tomorrow and maybe a Dental Oncologist and Opthomologist.

I meet be here a couple to a few days...

It's a little bit lonely and I'm kinked up from being stuck on a plane for 5.5 hours.

But, I am feeling better everyday from the surgery. Still the 'disturbing tingly feeling in my shoulder, neck and chin...I've decided that "feeling" is my body EATING CANCER CELLS UP :-) That makes it all easier to tolerate.

Also, I am able to eat more today :-)

I am practicing opening my mouth more and more (Hmmm, can I fit this huge chocolate croissant inside) - Just kidding, I am eating ALKALINE items as much as possible, but glad I can CHUG water like I could 2 weeks ago. (pre surgery)

Anyway, hope everyone is great!! Talk to you all tomorrow...

Michael

Sending positive vibes your way Michael. I hope your appt. went well this morning. Please post soon and let us know what you found out and what your take on MD Anderson was. You are in all our thoughts and prayers.

Love,
Jennifer

Hi everyone...

I'm back at my hotel now.

It went fine this morning...
Lot's and LOT'S of WAITING, but I am getting used to that as being part of this process.

Aesthetically, MDAnderson is mediocre at best...The campus is a huge cluster of tall buildings...but the shear size is still impressive.

I got there at 7:00 AM (5:00 AM on my internal clock!)

Michael, it is important that you feel good about the people. If the surroundings are clean, that is good enough. Glad they appreciated that you know what you are talking about. I was fortunate to have that kind of docs too. Makes a big difference. Thanks for the report.

yes, thanks for the report Michael. I was thinking about you and hoping you got some answers and a feeling of fondong somewhere where you could get treatment. Houston in July-September is certainly a place no one would choose to be because of the location or weather but you're going to be spending all your energy getting through your treatment and I don't think you'll be bothered by that too much.

It sounds like a great atmosphere. Good luck at Sloan Kettering.

Glad to hear that Michael. Sounds like you feel comfy with them. I remember how I just loved my Onco from the start. They took me to a room in the back of which was a large lounge chair. I sat in a regular chair and they said "Oh no hun, that chair is reserved for you my dear." I asked where the doc sat and they said in one of the folding chairs. hahahahahaha Then they asked if I would prefer coffee or tea and everything and everyone has been just as delightful ever since.

This aint no picnic but it sure helps when you get a little sympathy and understanding from your medical caretakers. I asked for a back rub one day and they gave me one! hahahahahahha I hope you find your experience as good as mine is.

Have a great day and bless you,
Barbara~

Hi Michael,

Remember me from the other board! Im so glad you came over here!

I have to say, reading through your ordeal has brought me to times of fear, sadness, excitement and happiness all in a matter of an hour or two.

Im so glad that all went well with your Surgery and that you are climbing that hill and giving it all youve got. When I was little my dad worked for a company called MATRIX, (long since defunct) and he used to take me to MD Anderson with im to install and Service the CCTV Video cameras and equipment at their facilities. I agree their buildings looked somewhat dated but it was an impressive campus nonetheless. I remember he put in an ID Badge system and we made some test badges with my picture on them. I think youll find the Texas hospitality quite relieving in your time of need. I have to say even back then when I was 9 or 10 years old, I had a fear of the place and wondered if Id ever end up their. I understood what it was about even at such a young age.

So I guess Ill cut to the chase. Remember I told you about my ENT appointment on the 28th? Well I went and was so scared sitting there in the lobby KNOWING he was going to look at the reddish area on my tonsillar pillar and we would certainly be getting a biopsy that day... but to my surprise after sticking the scope down my nose and looking at my vocal cords, inspecting my mouth thoroughly and looking in my ears and at my tonsils, even as big as they were, he did not seem one bit concerned about any of it. And he was a younger guy that was impressed with my knowledge of terms like "tonsillar pillar" hehe... and came well recommended by friends and doctors.

Well for a while I was happy, but particularly tonight the fear has come back from a few things you mentioned.

For the past few weeks, even before the appointment, Ive noticed occasional pain and soreness in my neck muscles on the right side. It has lessened somewhat lately but sometimes its uncomfortable. It feels like it goes all the way down into my upper right chest and I fear it is Lymph nodes enlarging

In addition to that Ive had ringing in both ears, but particularly occasional ringing in the RIGHT ear, sometimes I get headaches at the right side back of my head, and now when I clench my jaw on the right side I hear a "rushing" type noise in my ear, kind of like white noise. I dont hear this on the left side. My right ear also feels congested and I feel like I am losing hearing out of that ear. Also if I open my mouth real wide I feel a discomfort sensation in the back right of my throat that seems to travel to my ear a little.

My jaw is also tender and if I press hard on it its a little uncomfortable.

So I guess at this point Im going to reschedule and get my tonsillar pillar biopsied since its still clearly red in some types of light compared to the other side (in direct bright light it looks similar to the other side). My tonsils are still big but he said not to bother them if they arent causing me too much pain or difficulty, but today I had some hoarseness again. Remember, Im 22! I have to say, if I do get up the guts to have that pillar biopsied, and it comes back clear, thats IT. It is what it is at that point and it can have me if it wants, I cant allow myself to be tormented over my health anymore. In one way or another health worries have eaten up over 1.5 years of my young life already.

You are such an inspiration Michael. I dont know whats going to happen to me over the next few weeks, but I only hope I can have the same resolve you have shown my friend...

Here for you,
Ian.

P.S. Theres a song I want you to listen to if you have a way to download it, if not just shoot me a message Ill get it to you. It's a song by Mark Knopfler called The Trawlerman's Song. Its all about picking up and moving on again (in this case a Shrimp Trawler boat that is being fixed up to go out again). Music helps me through alot of things... this song was really good when I heard it.

Hi Michael,
I've been on vacation but your surgery and recovery have not been out of my mind. Glad your surgery went well and are now going to the very best for further treatment options. While I know nothing of Houston, I'm not certain that 61st and 1st in mid July (Sloan)except for the many restaurants in the neighborhood, isn't any better than Houston, weatherwise. I wouldn't let the weather determine where I go. On the other hand, if these centers can set up your treatment so you can have it in CA and have your dog and friends, without jeopardizing the outcome, I would go for it. Just make certain that the treatment will be equivalent.

Are they recommending IMRT, I can't remember.

Take care,
Eileen