Just wanted to give a quick update. I am scheduled for a consult with an oncologist and radiation oncologist for June 11 and 12th at MDAnderson.

I figured I shouldn't just be sitting around having pitty parties after my surgery, I am fully functional and pain is mostly managable to the point of being barely noticed with a couple of Tylenol every several hours.

So, I'll leave Sunday afternoon, and am working on possibly getting in for a consult with Memorial Sloan, NY for around the 13th or 14th, I could just go straight there from Houston before returning to Nor Cal.

At least this way I'm not just sitting around waiting to die :-)

Screw the Drs who tell you "BAD NEWS"...It was only at his insistance that I did the surgery first anyway...All this means now is that I should have done radiation / chemo as my 1st line, and now I'll have to do it as my 2nd line since the surgeon failed to get it all.

Thank you to everyone for being so kind, warm and supportive!!!!

- Michael

Please stop being so hard on yourself, Michael. You did the research and made a decision and nobody (not you & not 100 docs) does absolutely KNOW that one approach will be better than another. You take your best shot and keep fighting. You can do this. Hang in there! You are doing great.

Thank you ! Just for the record I am traveling to both ccc's to determine which one I will have my radiation and chemo treatments at.

I'll be leaving Sun AM from San Francisco, so I'll post the info here Monday.

Thank you for the encouragement!

Michael,

You did not make the wrong decision having surgery first. Going either way, there was no guarantee that all of the cancer would have been gone after the first line of treatment. You are doing everything exactly right and you are giving yourself the absolute best chance for survival. Do not look back and second guess yourself -- just throw everything at this disease that they offer you. The treatment will suck, you will have some very rough days to come, and no one has a crystal ball, but give it your best shot.

Hang in there,

Barb

Hi Michael --

I am surprised that you did not list Johns Hopkins, which has probably one of the top 2-3 head/neck cancer centers in the USA. We were up at Sloan -Kettering last week for a second-opinion consult (which went very well, excellent rapport with their very caring staff.) Dr. Pfister so much as said, you don't need to come here if you have Hopkins in your back yard (which we do). However we have not ruled S-K out because having a good connection with one's doctors is paramount in this sort of situation, and we have yet to complete all our Hopkins' consults so haven't met everyone.

The wife of a friend who lives in Trinidad (the island) was diagnosed with OC and they went to M.D. Anderson, just stayed in a long-stay motel while she underwent the treatment. Also very positive recommendations....

Just to say -- it is your life and who and where you have treatment is as important as what is done.

Barry Cooper

Male, 66, Stage IV, T3,N2b,M0, SCC right tonsil and b.o.t., 2 nodes, tonsillectomy 6/21, no other treatment as yet

Thanks Barry!

I am in HOUSTON tonight planning to meet the team at MD Anderson tomorrow...

I'll let you know how it goes.

Later this week I am going to Sloan-Kettering to meet with Dr Pfister and his team.

Thanks for the encouragement and let us know how you are on your journey.

- Michael

The "tingly" feelings are starting to drive me MAD!!!

The "Pins and Needles" feelings wake me up a few times throughout the night.

My entire right face, shoulder and chest are still mostly numb, but have this twitchy tingly feeling...

At first it was cute, kinda like someone was tickling me, but now I think it is causes mental illness!!

Any ideas? How long does this last? Does it get worse, better? Others have the same thing?

Thanks!!!!!!!

Well...It's 4:45 AM here in Houston and I haven't slept much at all.

"it" continues to get worse.

I don't know what is going on but every 20 to 40 minutes I am jolted awawke by the "tingly feelings"...I realize this sounds like I am saying "the aliens are following me again", but seriously, it's affecting my sleep (or lack of).

I have tried everything I can think of, so ANY ideas, no matter how remote or whacky are appreciated.

I will most certainly be discusing this with the Stanford Doc in the morning...

UUUgggh! I am so tired. Thanks for listening in the mioddle of the night to the ramblings of a derranged, sleep deprived, frankenstein... :-)

Hi Michael,

Assuming that some nerves were affected by your surgery, the tingly feelings possibly could just be the feeling coming back now that things are starting to heal. Sort of like when your foot or hand falls "asleep", then tingles when it "wakes up". If it is more of a twitch, I think that may be a different matter entirely. There is a very, very small possibility that you could be having focal seizures. Definitely ask the doctor this morning.

Rosie

I think Rosie could be right. I had some tingly feelings after my neck dissection, though I don't rememeber them being bad enoiugh to wake me up. I treated everyone as good news because my ENT said those were signs of nerves coming back to life.

Michael, I'm wondering how your meeting with the MD anderson team went. I've been thinking of you and hoping it went well and you are in warrior mode ready to fight your battles with this disease and win them.