Thanks Bart. For almost 35 years, all my jobs invloved protecting people. Now I can't even protect myself lol. I met lots of celebrities, public officials, dignitaries, and most Presidents, mostly old school, under various circumstances, not that we were buddy, buddy lol, well, Christine Brinkley did kiss me twice, and Jerry Lewis once did in his comical way, Frank Sinatra knew me by name, and had a cocktail with Glen Cambell, to name a few.

I write for the record in hopes it will help someone. I meant to add that my eating has been compromised, and my oncologist wants me to use three cans of protein a day through my tube, there was a reason I kept it lol, in addition too, my oral intake which is mostly carbs, but I'm not inept in the kitchen, and can whip up lots of things. I just don't have the energy, and some medications make you dizzy, which you probsbly know. I cook sitting in my walker, which I no longer need, unless I know I would need to stand for a long duration, and that wont't happen!

Speaking of dizzy, there is a recent report that Taxotere can cause intoxication, so thier advising to use caution in some. Got side tracked here lol.

Part of the problem is the Orthrostatic Hypotension that I self diagnosed with my BP monitor. This has been ongoing for a while feeling faint, dizzy, out of breath upon standing , and I thought it was High BP. Sometimes it is, but when I stand from sitting, it drops more than 20. Most, if not all, doctor offices check your BP sitting, so mine was never seemed bad. I never made it back to the cardiologist to complete the stress test, but will have to review that soon. I guess do what I can do now, and hopefully will help later on.

[quote] I can go to some of my other doctors, but I've just seem them, and no controlled substance can be telephoned in or by computer. You need a written prescription, and is only prescribed for 30 days, no refills. I guess it's the same all over. [/quote]Schedule II drugs are under lock and key out here too. They only fill with a hard copy script that is written from a book with special anti-fraud features.

Glad to see you post again. Seemed like you went on vacation or something. lol

Thanks Don. I wish I was on vacation. My iPad kept resetting my passwords, and I didn't know it off hand to log on, plus been a little under the weather with the pain, medications for the past few weeks. I turned down scripts for pain meds previously after several surgeries being I had some left over at home, if needed, since I only take them as necessary. Won't do that again.

Paul, I am really sorry to hear that you are having pain issues that are not resolved. I know you have been through a lot. I hope that there is also joy in your life and that one of your docs prescribes for you soonest.
Take care,
Tammy

Thanks Tammy. I have an appointment to see the Pain Management and Palliative Care doctor next Tuesday. I've seen her last year, and was helpful for the neuropathy.

I haven't been able to update my thread since June 23rd, but have responded to many posts, which is sometimes easier than collecting thoughts about myself. I probably had 8 doctor visits since, and a lot has happened in the medical front, but not social, so I'll stick to that.

Finally, I went to PT last month, after canceling 3x, for an evaluation, a little exercise, and was scheduled for bi-weekly visits, but haven't been back since due other appointments and issues.

Seen the Oral/Maxillafacial Surgeon three times. Still has me on Augmenton 875mg antibiotics (sp), and told me to stay on them until he says to stop! I had the abscess in my mouth/jaw area again, and had to see him a week later, and discussed the HBOT, and had to speak with my RO and ENT. Finally, with the cancer being clear, he called my local hospital to set up an HBOT consultation. I'll do the Marx Protocol, and have my teeth extracted, after 20 dives, and 10 after.

Had to see my ENT twice. As soon as my abscess was resolving my left shoulder/arm got worse with severe pain in the deltoids, traps had atrophied, more arm, hand neuropathy, and head becomes heavy after a while, and starts dropping, "Head Drop" like, but not as bad. He ordered a MRI to rule out cancer, and heard him say he suspects brachial Plexopathy (neuropathy). The MRI came back clear of cancer, although they couldn't do any contrast due to my low GFR, high creatinine. The same with a CT scan. My ENT is leaving, and invited me to folow-up with him at other top CCC after he leaves. We got busy talking other things, one being to a fellow saying I'm one of the few prople in the world walking around with no carotid artery! i was so happy for the NED, I forgot to discuss my shoulder/arm issue. This is actually my first scan, besides 3 month post Treatment scans, that I am clear of cancer in 5 years, so is monumental to me.

Saw pain/palliative management doctor the same day. She had no problem writing a prescription for oxycodone, lyrica and Voltaren Gel, an antiiflammatory. Problem was having it filled. Three pharmacies in manhattan didn't have, couldn't place an order or didn't carry the oxycodone. The same with about 7 local pharmacists. Went back to pain Management, so she wrote a new prescription for Percocet, Gabaoentin, figuring it would be easier. Wrong, no one wants to fill Percocet either. Gabapentin was filled instead of Lyrica. I met an old friend who made a phone a phone call to see who fills these prescriptions, and finally found one! The medicine helps relive the pain, nut makes me nauseas,and vomit, and usual stuff that goes with it. Taking colace, drinking more water, and the e-bag lol. I may have to take anti nausea meds once I'll be on this long term.

I saw my RO for the last time the other day. He is leaving too, but to another state. He is sending me his contact info if ever needed, and told me to follow-up with my ENT. My Proton RO will take over my case, but there is no one like him, who saved my life when others didn't want to treat me three years ago.

Met with the Hyperbaric Chamber doctor, staff, who remembered me. Said to say hello to a fellow oral cancer patient, OCF member! I asked about the carotid artery issue or lack thereof, and said he hasn't come across or read about that yet, so it's new territory, and now I have to get clearance from my surgeon lol. Had a chest x-ray after, and hope the Aspirational pneumonia is gone, so wasn't unhappy to have that done.

With all this my energy level is 0. My mom and I decided to get "meals on wheels" again, and started yesterday. It helps save us energy cooking, and cleaning up afterwards.

Monday I see my optomolgist for follow-up, need blood work, and then probably will hear about the HBOT, and doctor visits start all over agin with others I haven't seen..oncologist, nephrologist, neurologist.

Other than that, nothing new lol.

Paul, thats quite a hectic schedule you have! Even someone who is perfectly healthy would struggle to keep up with you. No wonder you have no energy!

Best of luck with HBO. Personally I greatly dislike HBO for the time it takes. It make me crazy laying in that tube watching tv thinking of the million other things I should be taking care of instead. Did your HBO doc's mention getting tubes put in your ears? I remember you mentioning you had done HBO before. Many facilities now require tube get placed prior to doing HBO. At least in my area they do. If you need them, thats one surgery that is very quick and easy.

Thanks for always helping others. Take good care of yourself with everything you have going on.

Good luck and be well!!!

Thanks Christine! They didn't mention the tubes this time. I did HBOT 3 years ago, and had no problem equalizing my ears by swallowing, probably from all the swimming, diving I dd, but who knows now. I have a collection of DVD's to watch, but have to remember to bring "G" rated movies. I brought Gladiator once, and not sure it was up to my fellow HBOT roommate's taste in the 2nd bed during the gory scenes lol.

I'm sorry to hear some of your news, Paul, although I know you aren't looking back! I was a little worried about the traps and the rhomboids. Did they address something for the head drop. It often happens when the sternocleidomastoid muscles fibrose or "cord out" like strands instead of muscles. When that happens it continually tightens and pulls the head forward more and more. It's called spasticity. Then the long muscles in the back of the neck get too weak trying to fight the head dropping forward.

There's a great brace that helps the head stop dropping and gives a lot of relief to the back of the neck. One is called the Headmaster. I have one if you would like me to send it to you.

http://headmastercollar.com

The most popular one now and used by ALS patients is Shane's Neck Brace. I'm not sure I would suggest it because of your neck surgeries.

http://shanesneckbrace.com/testimonials/

As far as brachialplexopathy, been there done that, too. The ART people completely resolved it. I guess I forgot to out that in my signature. If decided to limit that to just the terminal diagnoses, which reminds me I need to add Life to the list of those. I just don't know what date to out on that one. lol

Hang in there, sir! Nothing but love and respect for you. I've said it a number of times, but I would never have tried as hard without being inspired by you. If there is anything I can do for you I hope you know I would, will and am here.

Btw, I have a few "G" movies if you like Shrek.