Hello Paul:
I've been meaning to read your thread for a week now. A bridge partner giving me a newspaper article about proton therapy sealed it; I read your thread same day.

All I can say is your spirit is amazing. We all get caught up in the details of our own case, thinking how bad we've got it, until we read about someone else who is fighting a so much tougher battle, and for maybe the 7th or 8th time. Several times during your thread I thought how does this guy keep going on, never giving up, a true never-say-die attitude. But, every day you just seem to wake up, put on the armor and go back out to slay the dragon.

I don't have any words of knowledge to give you. I just wanted you to know that I am amazed by your stamina and spirit and that your continued writing and sharing when it's the last thing you probably have the energy to do is so much appreciated.

I hope you enjoy the Christmas meals you outlined above; I just wish I had some taste so I could enjoy something/anything similar.

Merry Christmas Paul

Tony

Thanks Tony. Just doing what everyone else would do in the same situation, and getting ready to leave by 5pm, and already nauseas, vomiting lol from taking Oxycodone since my teeth decided to act up since yesterday, but my oncologist gave me anti-nausea meds, and taking them now. Anyway, enjoy your holidays as best you can also, and I will update soon if I have anything newsworthy.

Merry Christmas!

Wishing you the best Paul. My admiration for you grows. This dude's fuse is about the thickness of the cursor line when it comes to these medical aparatchiks who seem bored with you trying to save your own life.

I have 4 proton treatments under my belt already, and the weekend off! It was an odd week, going in on Sunday, Monday, and then off Chistmas Eve and Day, which was the good part, and cooked up a storm, which made me tired for chemo by Thursday, but that went well without incident. I think the decadron, a corticosteroid given, kept me up the whole night, but I enjoyed watching on AMC the Godfather movies for the holidays, bringing back old memories.

I'm pretty much in and out of radiation in 40 minutes. The set-up time with the 'snout', positioning, repositioning takes the longest, and Proton Treatment can hardly be heard, but there is a slight sound in the distant like a radiator pinging or submarine sonar, and it's over before you know it, but they do two locations on me, change my position, brass snouts, I guess made for my tumors. I'm not receiving the large Gantry Proton machine, but a smaller "Incline Beam" machine, which may be proprietary, but uses the same protons. They are 4 treatment rooms, Gantry, incline beam, fixed beam, and other is incline or fixed beam, and protons can only go to one machine at a time, being it all comes from the same sub atomic machinery, which is probably the whole length of this very large facility, which is very upscale compared to other places I've been.

Using the same Aquaphor, Cetaphil on my neck, and they gave a sample of Medline Remedy, with olivamine, skin repair cream.

My hours were odd, at first, 7:30, 6:30 and 5:30pm, but on Tuesday, New Year's Eve, I'm moving to 9:30AM, due to request of the person driving me to New Jersey, and then off NYD. NYE I hope to have lobster, lots of butter, other fine food, and Prime Rib NYD.

This Monday I'll have my heart checked, really lol, with an echocardiogram. The abscess, tooth infections seems to be held at bay with the antibiotics.

Really interesting.

I couldn't go to radiation today due to the snow. I go back on Monday, so I have a three day weekend! I'll probably see my RO on Monday, and will ask about the days being made up, and about any percentage survival loss. Definately not gong in twice a day, if it's done with Proton Treatment. Have to have my blood work faxed to him since I can't get a copy until I see my oncologist later that day, they are not associated. So far, everything is gong well, minus transportation, and mixed treatment hours. I did have dry mouth once my air conditioner broke down, I use it during the winter sometimes, so I bought a humidifier, and that helped, along with biotene spray, water, sparkling juices, soda, and brushing during the night. I have more mucus since my surgery/radiation in October, and coughing from the vagus nerve removed, and do aspirate from from swallow study. the neuropsthy inmthe hands and feet worsened sincevchemo, so takiing gaopentin mre often. 7 proton treatments down, 2 chemo, 18 and 3 more to go...whose counting lol.

Cooked up a storm Christmas Eve, Day, NYE and NYD as planned. I made crab and lobster imperial with leftovers yesterday, and today beef pot pies, so the swallowing is good, supposed to turn my head and swallow to prevent aspiration, but sometimes I forget, food gets caught, and have to hack it out. and get into a choking fit. Better to turn and swallow.

I finished my 12th radiation treatment on Friday, and was my first full week without a holiday or interruption. I saw my RO last Monday, and starting to get mucocitis, so I'm getting the saline spray rinse everyday prophlatically, but since my 3rd chemo infusion on Thursday, my taste is mostly gone, maybe developing thrush, and neuropathy is worsening. My MO gave me a prescription for Lyrica, but is too expensive right now, $166, so sticking with the Gabapentin until I'm in the catastrophe phase with Medicare, and then may be only a few dollars.

Sometimes I forget I'm diabetic, and let my glucose get out of control, the decadron, corticosteroid, may be a factor with diabetics to increase it, and wasn't feeling well yesterday, blurred vision, frequent urination, thirst, and upon checking my blood glucose it was a whopping 575! I almost went to the ER, but I would probably be there a few days. I understand they don't let you leave until it's under 200. I've been taking long term, short term insulin, and got it down to 333 today, but also effects thrush I Believe. I bought a bp monitor with health concern now, since it's been running high. and is 140/92, pulse 89 this morning, but was higher, and reason my MO sent me to the cardiologist, and did the EKG, echocardiogram, and still have to do the stress test, chemically.

The Proton center had a graduation party last week for all prior patients, at least 100 people, staff. It was a catered affair witj pasta, salads, sandwiches, meatballs, chicken, and more. The food looked good, but I wasn't hungry after being bolted down for 30 minutes. They gave out certificates, had speeches, and have these gatherings several times, so no ringing the bell here.

Tomorrow I see the RO after Tx, so I'll see what he has to say.

Gracious, Paul, that glucose level is pretty scary - glad you were able to get it back into the stratosphere at least.
The graduation party that the proton center sounds encouraging if less musical. Keep us updated!
Maria

Sorry to hear about some of the challenges building. I never made the connection before but I believe your diabetes may have played a part of your system candida problem during treatment before.

Hang I there, Paul, you are seeing the top of the hill soon.

Thanks all. Definately, Ed, I think so too. The antibiotics for my tooth infection may not be helping either. Darn yeast lol.