Hi Everyone:

I recently posted in the section dealing with newely-diagnosed. I am now approaching treatment at Johns Hopkins for radiation for 7 weeks plus weekly chemo[carboplatin & taxol]. I will be see the dental oncologist next week and my date for start of treatment is Aug.9th.

My weight was only 150 pounds [perfect weight for my size - 5'8" but not for anticipated wight loss which I know will result from the treatment. I have added 8 pounds and will continue the bulking-up. I am also hitting my exercise bike to get my body in the best shape with 15 minutes daily [4 times/week]. Right now my main question is what other things can I do to get myself prepared for this ordeal.

Any suggestions would be appreciated.

Barry
Stage 4 with primarary in tonsil [removed]. Cancer appears localised to 1cm at base of tongue and in two lympth nodes.

I am so sorry to hear Barry-My dad had all of his healthy molars pulled asap. They encouraged him to do physical therapy 7 times a day for 5 minutes to keep the jaw in shape:
Open your mouth as wide as you can and shove that many tongue depressors in there. It keeps your muscles primed. For my dad, the healing of his pulled teeth would have been a delay in treatment. Also, practice obsessive dental hygeine to get in the habit. Floss, swish, brush. The dentist said if you do choose to keep teeth with caps, the radiation has been known to bounce back and cause burns in the cheeks. You can have an acryllic brige made. Also get flouride trays. Bulk up Barry! Eat tons-my dad is gaining weight right now- Cut out smoking and drinking, keep VERY hydrated.
Peace and love.

Hello,
Barry,

Sorry about the pulled molars. Our radiation at Rex in Raleigh is precise enough allowed me to keep my teeth. I used the floride trays nightly and have no problems going on 10 months since diagnosis. treatment finished in early Dec and I had my neck disection on Jan 31. I assume you have a stomach tube. I found that Boost or the Walmart brand to highest in calaries. I took three bottles, three times per day. That turns out to be about 2100 calaries. I lost 65lbs, but needed to lose the weight anyway. I also had the SCC at the base of the tongue and two lymph nodes.

If I can help further, my email is [email protected]. I will even give my phone number if you wish.

Steve

I will be praying for you Barry. You can do it one day at a time.

God bless,
Barbara~

One thing I would suggest. Looking back on what I went through and what I would have done different BEFORE treatment that would have definitely helped... here goes.

In my case, it was like I hadn't caught any sort of break since October. Of course, I didn't realize I was sick or had cancer prior to diagnosis, but it seemed like I was paddling as fast as I could with no sort of break. You see, there were the holidays and commitments to having to travel, the shopping.. blah blah blah.

It seems as soon as the plane touched down I had the diagnosis of cancer and then blammo treatment. By all means, bulk up as fast and as much as you can.

Looking back, I wish that I would have had more time to have been better organized. I tend to stock up on alot of stuff that the family needs anyway, but it sure would have given me piece of mind to have everything organized, sorted and ready for my couple of months of "inactive" down time. We had been thinking about perhaps hiring a maid service if things got too out of control, but we sort of struggled through and while my house wasn't exactly up to my standards, we got by.

Thanks to these message boards, I sort of knew that I was not going to be up to much. I took suggestions from friends on DVD's to stock up on and watch. Started a list of all the movies that I would probably enjoy watching, books to read etc... (this all pretty much depended on my energy level. There were weeks that went by that I had a hard time reading much of anything, nor did I really care)

I tried to anticipate and prepare for the couple of months that I would really not be up for the demands of my world and also I made sure to organize as much as I could. I made a list of phone numbers and posted it by the phone so my spouse could reach people easier without having to dig for numbers. I put together a day planner that was strictly for keeping track of appointments. Every business card I came across whether it was a doctor, dentist, pharmacist or medical supply place, I would file the numbers. I could also keep track of all the medications and the date of prescription on one page. This comes in handy when someone asks you what medications you are taking, because not all departments of the medical team keep track of it as well as you can.

I also stocked up on comfort foods and convenience foods for the family. On one hand, I wanted to eat as long as possible, so I had plenty of soups, ice cream and yogurts.

This sounds kind of goofy posting this now. I felt better trying to prepare myself. It did give me a bit of a feeling of control just anticipating what I was going to need, so when I felt too bad, I could have it on hand. Much of it was "comfort" type things like picking myself out a decent bathrobe, slippers and pajamas that would work with a PEG tube. While I was feeling still with it, I bought comfortable pull on pants, camisole tops and sweaters that would not need to be removed for radiation treatment.

Jen

Barry,

I have to agree with the suggestions about "bulking up" ahead of time. I was very committed to keeping up my nutrition levels during radiation, but still lost around 15-18 pounds (from a starting point of 130).

I'd also recommend that you think in advance about what elements of your daily routine can be temporarily handed off to someone else (or postponed) in the event that you get to a point where you can't realistically keep up with all of them. The effects of radiation can sneak up on you - I know I felt quite good for about the first three weeks and thought I was going to skate by with no significant problems, but I was wrong. Before my treatment started, my typical work week was around 55-60 hours; by the middle to later stages of radiation (and several weeks beyond), it was down to about 30 hours. The good(?) news for me was that, even with the skin and mouth burns, thrush, and severe chewing and swallowing problems, I was able to keep up with at least a part-time work schedule, which allowed me to keep some sense of "normal" in each day.

Good luck with your treatment -- please keep us posted as you go along.

Cathy

I agree with the planning ahead as much as possible. Like Brainstorker, I had done a lot of reding on this board so I knew soomewhat what I woudl be facing and tried to plan ahead as much as possible. here are some things I did

1. Created a medication/symptom log sheet in WORD, one per day, printed out 50 of them, three hole punched them and put them in a notebook binder. I figured with the meds I might be getting this was a palce to keep track of what I was taking and when I took it (I'm terrible abotu rememebring if I took a pill or not and when it gets to about 8 different meds it is really handy to have a written log. I alos wrot in this any new symptoms so I could recall when they started when talkinbg to a doc later. I'm still using these.

2. In the same notebook, I had some pockets that had articles I had printed out reviewing methods of treatment of mucostisis, etc. Any info. I thought might come in handy to ask about wne in there. I ahd one pocket just for the prescrption drug printout of info. that comes with each prescript. (with the info. about side effects,e tc.) When I was at my most out of it, my husband kept track of things in this notebook.

3. I also stocked up on some of the over-the-counter things that people recommended here: gauze pads (small ones for putting in your mouth to help soak up mouth giunk), Puffs Plus tissues (buy lots of these), tussin cough syrup with guiafenesin (helps break down mucous when used through the tube), baby toothbrushes, biotene products and foods that were easy to eat (cream soups, fruit in syrups, applesauce, small containers of soy milk). I had my chemo from noon to late afternoon and so needed lunch during that time--I got small packs of canned fruit and soy milk and other things that were easy to eat/drink that could be carried to the cehmo easily.

4. I also made a list of phone numbers of everyone who offered some type of assistance during radiation and wrote next to each name and number what they could offer and when they had time to help. This came in really handy when my husband had a work commitment that required he be away every evening for 6 days during my final week of radiation--without much help from me, he called my friends and got people to come stay with me during thise evenings.

5. I had already handed over most of the my work to other folks but I was teaching an online course still just to have some toehold of normalcy while I went through treatment and before rad I made sure I had a colleague trained to take that over in a pinch, although I ended up finishing it myself it was good to know if I got really out of it, there was someone else who could pick it up.

6. Most of this is actually what other people have said, I guess. The last one is one that maybe only I did. I was afraid I would get depressed and maybe discouraged during treatment so I wrote a list of things I loved about my life (my pre-cancer life) that made fighting for my life worth the pain and effort. And I wrote myself little notes of encouragement. It turned out I didn't go back to those too much during treatment, but it was like the act of doing it helped me get strng in terms of not being easily discouraged (well, until after rad. was over at least--I have to admit I've gotten discouraged about the time it takes to heal!).

7. In retrospect, before rad. started I would have hired someone to come in and clean. My husband kept saying he would call people during treatemnt but kept "forgetting" and so we have just had a dirtier than usual house for the last several months (today is actually a big housecleaning day for me since my brother is coming to visit starting tommorrow and I've realized in the last few days exaclty how bad things are--especially things like dusting which my hiusband just doesn't ever do!) I would also have hired someone to help with garden care. If you are one who weeds in your family, be aware that you really shouldn't be doing that during chemo and that those weeds get out of control fast when no one does it!

Barry, Hi. I'm the caregiver in our situation. And you have gotten some good advice. The hint to get every "business card" and phone # of the people who are treating you is going to come in handy later. Also,I got a 12"x81\2" calendar and started filling in each day from the time John saw our family Doc and got referred to an ENT. That calendar has never left my side since. It has all test and scan dates, all Dr. visits, day he entered hospital for surgery and day dismissed, 1st rad Dr visit, 1st rad tx, etc, etc.Because the Docs, etc. were 150 mi away, we also kept up with all mileage and hotel expenses for tax purposes. I have used the calendar several times in the last 2 weeks, to argue with the Ins folks, to fill out Soc. Security papers, etc. If I hadn't kept it, I would have never remembered the sequence of events. And John was too out of it to remember much. Sounds like you are doing great with food. Keep it up I would also suggest that you don't put much on you dance card starting ater the 2nd or 3rd wek of rad. Much good luck. Amy

Another thing I just rememebered I did that was really helpful was to set up a way I could update people on how I was doing over the internet so that not everyone would call every week. I set up a Web page on caringbridge.org.

Hi all --

Thaks for all te good advice so far (I am Barry's wife, Gail). I happened to hit the 'net before he has this a.m.

Lots of great suggestions -- some we already implemented since it was obvious that things were flying pretty fast -- like, I'v made up a list of contacts for every part of his team and making sure we know *who* is in charge of each stage. Yesterday must have been "call Barry Cooper" day at Hopkins -- started out with his medical oncologist at 8 am and all through the day, setting up appointments for next week: nutritionist, dental oncologist, blood draw, chemotherapy team and medical oncologist assistant -- all on Monday and Tuesday as Hopkins is trying to give him some time before treatment to get over to see his 98-year-old mum in England. Although she is amazingly fine (lives alone, can you believe!) you never know at that age and Barry knows that he will not be able to travel for months if she should take a down-turn.

He is not having induction chemo as his disease appears to be stable (for the moment) and will start concurrent chemo (carboplatin) and tomo radiation on August 9. He will have to get a peg (ugh!) but they apparently do this just before treatment starts. Will find out more from the nutritionist Monday. His only concern is that he may need dental work that will preclude travel, but again, will find that out Monday.

On that regard, what has been people's experience with denal crowns? I would think -- since they are a lot of metal -- that they would be best removed and the tooth capped with those plastic "temporaries" but I haven't read anything about that on the forum. He does have 2-3 teeth with lots of fillings, too...

One thing that is great is that our friends are really into helping -- one signed Barry up for Blockbuster's DVD's through the mail and we keep getting gifts of (fattening) foods. He has gained 8 pounds since his low point after the tonsillectomy and he has two week's plus to go. I have to be careful, I am not trying to bulk up! <gr>

We stopped our cleaning service last year to save a few bucks but it will be reactivated! This is going to be hard enough without having to clean house...

Again, keep the suggestions coming and we will update everyone as things progress.

Cheers, Gail

Gale, fwiw, my radiation oncologist told me that metal fillings might cause extra irritation of the gums/lining of the cheek near the filling but wouldn't really make any difference in the effectiveness of the radiation. I have 5 teeth with big metal fillings and I did get mucositis sores/lumps on my cheeks near them but nothing too awful (I also got sores in several spots with no fillings so who knows). I don't know about crowns because I don't have any.

As for DVDs, if you aren't already signed up, this would be a great time to sign up for a Netflix membership on the web. They give great recommendations for you once you put a few movies you want to see on their list and rate some movies you've seen. I usually am not that into comedy movies but during my treatment, that was all I wanted to see--nothing to heavy for me thankyouverymuch. If I had a week when I didn't want to see movies, no big deal, there's no time limit for how long you can keep the DVDs and as soon as you send one back, they send the next one on your list.

As for the PEG, getting one is no fun (Barry should be prepared for a few days after the surgery where every time you use your stomach muscle at all it hurts), but I do think it makes treatment much much easier. With the chemo, he may want to consider getting a port too. Especially if he has hard to find veins. I am very happy that I got the port and they combined the PEG and Port surgeries so that I got them both on one day.

Hi Everyone:

Many thanks for all your good advice. I have had lots of good suggestions on getting things in order and dealing with the side-effects. I am sure I will have more questions later.

Today I go up to Johns Hopkins Hospital to [1] meet with a dietitian and [2] have my teeth/gums evaluated by a oral surgeon in preparation for treatment. Tomorrow I am back up at Hopkins to have blood work done and then have an orientation along with all new chemo patients on what to expect. After this meet with chemo nurse and doctor to answer my specifc chemo questions.

We are still hoping to get away for a few days before treatment start although this will depend on any dental work.

Thanks and I will be reporting back shortly.

Barry

How you doing Barry? I too went away for a few days and relaxed and recouped before I started. I am glad to see you are moving right along and not delaying for weeks and months.

Come check in and let us know how you are.
God bless you and give you comfort,
Barb~

Hi (Barry's wife reporting)-

The dental and nutritionist consults went well -- dental oncologist said Barry's teeth were sound and altough he has quite a few crowns, the roots and bone are good so he doesn't need any dental work. In fact he complimented Barry on his dental hygiene regime (which he is faithful about since a scare with peridontal disease 8-9 years ago.) They also took molds for the fluoride trays he will need to use from now on.

Nutritionist pretty much told him he would need to get a gastric tube (which he expected although not at all enthused) -- that will be done after we get back from our pre-treatment trip. He has gained about 12 pounds since his weigh-in on July 5 at Sloan and still has some time to bulk up more. All that cheesecake, cashew nuts and smoothies! Of course I am trying to be good as I do NOT want to add pounds, having just gotten down to my desired weight earlier this summer. <gr>.

They will do the radiation "walk-through" August 9 (checking the planning) and start the real thing the next day. The start of a long hard road but one that must be taken...

Gail

Gail, while I really wish Barry the best luck with tx, I wish you good luck too, as I sit here eating a leftover KFC chicken breast and some blackeyed peas. Since John quit eating 3 wks into rad., I quit cooking and I have gained 5 lbs. on a trashy diet. It's really hard to motivate ones' self to cook and eat healthy alone. Also, speaking as the caregiver, I am thankful every day that John has a PEG. Without it, he would either be in the hospital or gone. Amy

Gail
Using the peg is VERY important.At about the 2nd - 3rd week the effects of the rad will sneak up on him.I dont know about your husband but Jerry was given steroids to take the night before and the morning of chemo.They give him another dose right before they start the chemo.The first week he did real good until Mon, the 2nd week he did good until Sun and this last week has been the worst so far he has been in bed since Sat.He has 9 more rad tx and 3 more chemo tx.As of last week he had lost 20 pounds and finally started using the peg last Fri.I am sure he has lost more weight.I tried to prepare him for these days.He told me a couple of days ago he didnt know if he was going to make it thru the next 2 weeks.He thinks that once the rad is over with that he will bounce back to his old self in a week and thathe will be able to return to work in Sept or Oct.He still has surgery to go.It is a very hard and long road with MANY BUMPS!

Barry and Gail,
Everyone has given great advice and the only thing i can say is to agree with Nellie about setting up a web page at caringbridge.org to keep people updated. It's free and VERY easy to set up even for someone like me who is not very good with computers. The site has been good for me for journaling purposes and I don't have to keep repeating my story and updates to everyone. I also use the site to indicate things that I need such as movies, someone to cook food for me ( i even put specific food lists), prayers etc. Asking for help is not easy but you have to remember that everyone REALLY wants to do something to help and being able to put my needs out on the website was easier than calling folks and asking for their help. When I'm feeling down I put that out there also and it's amazing how people come out of the woodwork to support and encourage me through those times. My prayers are with you both.
Francine

Hi all --

Back from Hopkins yet again (reminds of when I worked in Baltimore, you sort of start driving by instinct through all those little streets) -- A long day starting with blood draw, including a LOT for an HPV study going on there, then the "chemo class" they give to everyone starting chemotherapy, then long meeting with physician's assistant for info specific to Barry's treatment, then a long seesion making appointments to mesh everything with radiation times, then another blood draw to do PTT etc. for gastric tube insertion in about 12 days. Anyway, it now seems to be in place. Whew! We now have about 10 days to relax and we are going to try to get away!

Kind of tired now so going to sign off and kick back -- I can't afford to get sick. myself...

Thanks, Gail

Gail
So good that you have time for a break, enjoy the 'real' world for a while, and remember that we will be here for you, when the real world gets a bit messy....
Sunshine... love and hugs
Helen

Hi Barry, Gail,

the PEG is very important. When Barry can't eat any more, make sure he takes enough Boost or other product each day to keep his strength up. I found Boost and the Wal-mart brand to be the best and most reasonable as far as cost/calories/protien. I took 3 in the AM, 3 at noon and 3 in the evening for about 2100 calories a day. Several people local here in Raliegh were not getting enough calories during their treatment.

Steve

hey Barry and Gail,

i was treated at hopkins in 2001, so your post bring back vivid memories for me. barry's schedule is almost the same as mine was. i started the day after Labor Day. i thought it was a fine time of year for treatment because i had the deep winter for sleeping and recovering, then up and about as spring came.

best wishes to you both. you might want to get some books to read for the waiting rooms. my mother sent me a joke book that worked real well because i could easily pick it up and put it down.

if i can be of any specific help with jhu stuff, send me an email.

cu,
larryb
larrybliven at yahoo dot com

Hi Larry --

Thanks for the upbeat message -- we are pretty well ready now (have to be since we are off to Maine on Tuesday, back Saturday and Barry gets his peg on Monday). I also have a very funny book that I gave my mom when she was in NIH for 12 weeks (leukemia trial) -- Dave Barry -- it's the only thing that made her laugh -- so hope Barry likes it as well.

The oncology nurse suggested a portable DVD player as well (with earbuds) -- at Hopkins it is quite a wait for chemo (probably is everywhere) as they have to check bloods, then release script to pharmacy, mix up chemo and then re-check independently, before send up to infusion area -- and then the wait while the drug is administered. They joked and said they will wait until you've finished the end of your movie <gr>,

Will send private ms. re who your docs were, etc.

Gail

Gail, I hope you and Barry enjoy the vacation before the peg insert. You both sound like you're as prepared as you can be otherwise. A cancer survivor friend of mine said to me, before I started chemo/rad, "the worst things you prepare otr probably won't happen and there will probably be some unpleasant things you don't prepare for that does happen so just accept that". It was good advice. Take care.

Nelie

Dear Gail and Barry, Wishing you both as smooth sailing as possible for the next few months.Your love for each other stands out strongly in your posts. God Bless. Amy

Hi all --

We are back from Maine -- had a great 5 days visting friends, went whale-watching (and saw some!), bird-watching, hit the beach (Barry with SPF 45 sunburn block), ate lobstahs, ate more lobstahs, read books, listened to Salvation Army band every night at Old Orchard Beach pavillion down the street from our friend's cottage, read more books, took walks, etc. In other words, kicked back and tried to forget (for a few days) cancer...

Barry goes in tomorrow to get his fluoride trays fitted (he will use for radiation shields as well) and also, to get the peg inserted (ugh!). We are a bit ambivalent about the latter, obviously it is vitally important for many to let them get through treatment but also allows one to avoid the pain of swallowing and later can lead to serious swallowing issues. As his ENT said (she's been through HNC treatment herself so knows) -- you have to try to keep swallowing no matter how much it hurts -- Barry says if she could do it, no peg in those days, old-type radiation, really massive mouth sores, Barry hopes he can as well. We shall see...

Will post updates as things progress...

Gail

Gail, I'm glad Barry has such a positive attitude!
I just hope he isn't setting himself up for a "pride goeth before a fall" issue. It reminds
me of stories of "momma 1" whose baby just popped out after 10 min. of labor and "momma 2" who pushed for 24 hrs. to deliver. You just never know! Your vacation and the lobstahs have me drooling. Amy

Hi --

Well, back from Hopkins and Barry now has his PEG tube inserted -- not too happy at the moment as it hurts (which he expected) but otherwise OK. Taking Percoset. He is not using the tube now of course, and hopefully not for some time, but we decided it was better to get it in rather than wait until he was losing weight and was feeling bad due to the cumulative effects of the chemoradiation.

He also had to have new fluoride trays made -- rather funny, sort of embarrassing for Hopkins, his were done, sitting on the counter for him and disappeared ("misplaced") -- the nurse and I hoped that some other "Cooper" isn't walking around wondering why his trays don't fit. Anyway the new ones will be ready for his radiation walk-through tomorrow. We will also meet with our chemo nurse to go over tube care, flushing, dressing change etc.

Another long day -- and so it begins...

Gail

Hi Gail
Even if he isn't using his PEG yet, don't forget to keep flushing it with sterile water...
Sunshine... love and hugs
Helen

Gail
I just wanted to wish you and Barry the very best in your forthcoming battle .
He is lucky to have a wife who is so "on the ball" proactive with his care protocol.
Just remember , you are going to be stressed tired and really scared .
Take all the help you are offered and try to have some quiet time on your own to re-charge the batteries.
Many positive vibes coming your way.

Take Care
Marica

Gail, you and Barry are in my thoughts and prayers. God Bless, Carol

Hi --

Post #2 from August 8 (the day we *were* supposed to be arriving at Weipa, in the Cape York Peninsula of Australia, picking up our 4WD and taking off for parts unknown -- in any case, excuse the somewhat regretful digression) -- there was a knock on the door at 8 pm and a big guy standing there in the rain with a big box, from Hopkins Home Care with all the g-tube supplies (syringes, saline, etc. etc.) we will need -- these people are on the ball, we never ordered it, the order had written on it "please deliver TODAY! New patient needs it!" ! The guy said he had stops all over DC suburbs still to do -- how he found our house on a cul-de-sac, a long dark pipestem drive, in the pouring rain is beyond me...

A folder with the supplies also offered a suite of home care options, mostly for people who don't have an at-home care-giver or who use g-tubes or other medical equipment because they are disabled and can't handle it themselves. You sign up on a sheet for how many at-home visits you need and for what -- it does cost $$ if you are on Medicare but some insurances (mine for example) would pay for it . We live 35 miles out, I am not sure how far they go. They also rent medical equipment (hmmm -- wonder if they rent suction machines for nasty phlegm?) The Hopkins home-care was recently written up in newspaper as it is a pioneer program in the state to keep the elderly or ill in their homes and out of nursing homes.

We also apparently have a home-care case nurse whom we've not met yet -- hopefully we will not have to take advantage of this service but it is good to know it's available...

Gail

Gail, the suction machine we rented costs us $4o.oo a mo.- not covered by our ins. because the supplier is out of their PPO. Even tho their nearest supplier is 75 mi. away. Anyway, it is one the best things we have found for the phlegm problem. Think about the Australia trip as a reward to come for getting through all of this. Best luck. Amy

hi Gail,

Hopkins home delivery folks made deliverys to me while in Balitimore during the week and to my home in Salisbury, MD on the weekend. i could not believe that a truck or car would show up 2.5 hrs from baltimore with supplies for me. no problem! they deliver.

i don't know if they continued to Ocean City for a beach weekend.

best wishes,
cu,
larryb

wow. that's impressive home care service. Gail, I would see what home-care visits you can get even though Barry does have you as an at-home caregiver. You will need breaks every once in a while and just the stress relief of having someone else come in every so often might help a lot.

My sympathies to Barry on the PEG insertion pain. The good news is that it goes away pretty quickly, as he is probably already finding out.

hi Gail,

Hopkins home delivery folks made deliverys to me while in Balitimore during the week and to my home in Salisbury, MD on the weekend. i could not believe that a truck or car would show up 2.5 hrs from baltimore with supplies for me. no problem! they deliver.

i don't know if they continued to Ocean City for a beach weekend.

best wishes,
cu,
larryb

wow. that's impressive home care service. Gail, I would see what home-care visits you can get even though Barry does have you as an at-home caregiver. You will need breaks every once in a while and just the stress relief of having someone else come in every so often might help a lot.

My sympathies to Barry on the PEG insertion pain. The good news is that it goes away pretty quickly, as he is probably already finding out.

Gail, I forgot to say my sympathies to you both on having to delay that Australian vacation because of this. Ouch. I'm sure thinking about that doesn't make it any easier but ultimately it will only be a delay!

Nelie

Hi --

Well, we are not only saying "next year in OZ" but we are planning a trip to Papua New Guinea (my present to Barry when he gets through this -- everyone needs a light at the end of a long dark tunnel). Don't forget we are serious birders and have travelled all over to see birds, & of course PNG has the beautiful "birds of paradise."

We would go with our Aussie friends who run a bird tour company -- very coincidentally their top guide in PNG, Kris, was diagnosed with Stage IV HNC just 2 weeks before Barry and is being treated in Brisbane with chemo and IMRT. We all hope that he can be our guide when we finally take our NG trip -- wouldn't that be "one for the good guys!?"

Well, have to run and start getting ready as Barry has his first radiation treatment today -- he had a "walk-through" yesterday with the tomo machine and all looked good though he's gained 16 pounds (Dr's orders!) since the simulation and they had to fiddle a while with comparing the scans and may have to slightly enlarge the mask around his mouth. The tomotherapy machine is a pretty impressive beast -- I spoke to the rad physicist a while about its attributes vs. conventional IMRT.

Barry was getting a bit claustrophobic being held in the mask so long (longer than a regular treatment) and may take a mild sedative today. We are also bringing some CDs to play as they will pipe in music to the patient. He is also getting amiphostine and we are a bit worried about the vaunted side-effects -- being hydrated is the major issue and he is also taking Zofran. The rad onc says most of their patients can only take the Ethyol about 1/2 through the treatment (about 3 weeks) before the side effects start catching up -- permanent queasiness, chills, rash -- and they have to stop. But apparently that's enough to help preserve the salivary glands.

Gail

Barry: (T3N2bM0) - SCC Stage IV; right tonsil and base of tongue, 2 lymph nodes; tonsil removed 6/21, negative margins except for 1.5 cm left at b.o.t.; 33 sessions tomo-IMRT (66 Gy) starting 8/10 with 6 doses carboplatin (2 AUC) starting 8/11.

Gail and Barry, in case you missed it in the news, there is this wonderful woodpecker in our Great State of Arkansas that would be fun to see. And I'll fix you dinner if you come on down. Amy

Hi Amy --

Oh we know about the Ivory-billed Woodpecker! As soon as the fish and wildlfe folks figure out how (or if) it's possible to get folks to see it we will be down! However it may be a few years before they feel that this is safe for the birds, which were thought to be extinct for years.

We have seen another bird also thought to be extinct (since 1880) and only one specimen ever taken -- a tanager in Brazil. Some biologists were sitting having lunch under a tree a few years ago and one looked up and said, "Oh look, there it is...!" We saw it in 2000, quite a trip!

Amy, when we get to Arkansas we will definitely visit you for that dinner!!

Gail