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