Hi all --

Actually, two bumps in the road -- Barry wasn't feeling too well Friday but it was his 31st day and this was certainly not unexpected. (It's not a time many people go dancing about in the streets). However he had some chills and a slight fever (99.8) so I paged his rad onc when we got to Hopkins and they examined him -- he was coughing up a lot of phlegm, and not the mouth/throat stuff but from deeper in his chest (or trachea) -- and was very hoarse. His temp at that point was 100.6 so they sent him up for a chest x-ray, took a urine sample and also blood sample for culture, and wrote scrip for antibiotics (cipro).

After that he went for his treatment and after his scan, the machine stopped 1/3 way through his actual (boost) treatment and wouldn't re-boot! The mechanics came and worked on it for several hours while we all waited, to no avail -- Barry was not feeling any better so we threw in the towel and went home. Started antibiotics but that night he had more chills and also, fever back up.

Next am he felt a bit better (no fever) but I called Hopkins and spoke to on-call onc; he said x-ray and urine sample were clean but the blood was "pending." Uneventful day except for Barry having much more phelgm and mucous, especially when he tried to eat (very hard to swallow). It's like it suddenly decided to start up on almost his last day of treatment. Watched two DVD's and then, a call from Hopkins -- he had to come in asap as the blood came back positive for a bacterial infection ("gram-positive coccoid form but not sure yet if strep or staph") and they needed to put him on IV antibiotics. OK, off to Baltimore dodging baseball fans piling into Camden Yards (Orioles).

Took a while to get admitted -- two docs on call, both young ladies younger than Barry's daughter (!) and both nurses were male, a nice switch from my point of view -- took more blood and started a vancomycin IV, a broad-spectrum AB. Still lots of pus-filled phelgm and thick mucous. Since he hadn't drunk much since this started, also some hydration. Finally in bed in Weinburg (CCC) Bldg. at 8 pm. The nurses set up a suction line for his phelgm (btw, one said there is "no problem" getting one for home if needed) and started another IV with yet another antibiotic. Brought him some chicken noodle soup which he ate most of. Went over his med's and the (obviously weird to them) things HNC patients do for their mouths and skin. Went home at 11 pm. Oof!

Next am back at about 8 with all his various meds and stuff (Gelclair, etc.) -- he was doing much better and (very interesting) no more deep phelgm and very little mucous. In fact there were trying to get a deep sputum sample to culture and he hadn't "produced" yet. (Makes you wonder if some of the serious phlegm/mucous problem people have are the result of underlying low-grade infections. Without a fever prompting having a blood culture done, we wouldn't have known.) Doc comes in along with his breakfast (2 scambled eggs, cream of wheat, milk) and he's pleased to see Barry can eat it, albeit with pain meds and swish with "Larry's Solution" -- the lidocaine mix -- (no one knows who "Larry" was).

I had to leave at noon for an appointment and called him when I got home near suppertime. No answer so I called the nurse, she said he was doing very well and wanted to go home but that he couldn't until they actually typed the bacteria and ran a series to see what the best antibiotic was, and then, whether this could be given orally or needed IV. He doesn't have a pic-line so not sure how to handle latter as I can see he is champing to get out.

Finally spoke to him and he was bitching about the food they sent (not what he ordered) and the small selection of TV channels (we have cable at home) -- so I guess he is feeling better. He will have his treatment tomorrow as usual (unless the tomo is still down) and then we shall see if we can "spring" him...

Anyway, I am really impressed how responsive and careful Hopkins is -- I must have had 3-4 calls from medical onc's on Saturday checking on him.

There always seems to be a bump or two along the road, let's hope this is the last one until at least we can get his radiation finished!

Gail

Hi all --

Update -- still waiting for the bacteria ID/antibiotic screen to see when Barry can come home (that is, can he just take an oral med? -- blood culture yesterday was negative and he's feeling OK but of course they won't stop antibiotics so soon. He's bored and not happy with the food -- some of it actually makes him queasy to look at (all the nurses agreed, they strongly hinted I bring food to him which I will do tomorrow). Took up DVD player and movies to wile away the time. Watched "The Wedding Date."

Tomo machine still down -- pieces of it all over the floor. The guy with equipment to align it finally was able to get out of Houston (Hurricane Rita) and arrived today in Baltimore so hopefully it will be up tomorrow. We *really* want to get this treatment over with!!

Barry's other major excitement today was taking a shower with his IV rig trailing behind.

Gail

Dear Gail
I just wanted to wish you and Barry "all the best"
he has been a trouper through all of this. I know you are both ready for this to be over, won`t be long now.
He really lucked out with his caregiver too!

Take Care
Marica

Oh yeah, showers when you're hooked up to an IV are SOO much fun. I hope they are considering giving him IV Diflucan along with the broad spectrum antibiotic since I know he's had problems with thrush.

I can really identify with this--and the frustration and impatience he's feeling. I was in the hospital (chafing to get home) right after the end of my treatment because of low WBC and some sort of fever that came out of nowhere due to some sort of infection which no one ever did identify specifically (but they kept me there 9 days on antibiotics to be sure they'd eliminated all the nesty things it could be and to wiat for my whote blood count to rise just a little).

Anyway, I'm sure Barry won't be there anywhere near that long and I do hope the machine is fixed and he gets his last treatment tommorrow. I know my husband has said since then that the absolute worst time for him as a caretaker was when I landed in the hospital right at what he thought would be a time when I would just be at home needing less travelling from him--and I was cranky and miserable too and wanted him there with me if I ahd to be imprisoned in the hospital. Like you, we ended up watching DVDs on his laptop tog et through the hours but those were some looong frustrating days for both of us.

Sending you "hanging in there" wishes.....

Nelie

It's funny how little things mean so much when you are trapped in a hospital. I was most annoyed that at all the medical facilities they didn't even have the Comedy Channel. Despite how horrible I felt, I thought to myself that if I were ever to be a multi-millionaire one of my charity acts of compassion would be to install a full line up of cable for the hospital and cancer center.

It reminded me of some study they did years ago about how "laughter" eased and helped heal those with serious illnesses. In my perverse logic, it's almost UNSEEMLY to not have The Comedy Channel as mandatory fare for the sick and infirmed.

Even now that I'm still recovering from treatment, I'm more of a tv and movie addict than I use to be.

After my neck dissection, I gave the kitchen staff fits. They kept sending up diet food---low calorie yogurts and everything else labeled "low calorie" I had to keep telling them I need the calories (should have been obvious)

Here's hoping your mate returns to his home environment. There's nothing like recovering in your own nest.

Jen

Hi all --

Barry came home yesterday -- I was there for rounds and he stood up and gave the doctors a very convincing argument about why he needed to get home (mostly to do with needing to *eat* since their idea of "food" isn't his, especially with his compromised taste.) Apparently they bought it, as they came in shortly after and said he could go, luckily his staph infection can be controlled by an (expensive, of course) oral med.

The tomo was still down, our RO had to come back from a meeting at NIH and revise 14 (!!) treatment plans so that his patients could be treated on the other machines. He didn't want anyone to miss any more days. Not a happy camper, neither were the tomo patients as the other machines do not have as focussed a beam although for one treatment (we hope) it should not make much difference. He is a very nice guy but I think blood will be on the floor if the (ever-expanding) team in engineers and assorted magicians flying in from all over don't get this thing back up!

Oh yeah, the RO also wanted Barry to take amiphostine again because of the fact that he is *supposed* to be getting just 3 very focused "boosts" just to tonsil bed and base of tongue, missing parotids, and the other machines can't do that. Luckily we had some anzemet with us, I made the nurse turn his back (in-patients are not supposed to take meds from home) and Barry popped it before leaving the in-patient floor to go down to radiation.

He finally got treated at 6 pm and we got home exhausted.

Gail

what a long grueling day. But you are almost done...keep hanging on to that! I hope Barry is eaitng better now that he has your cooking to sustain him......

Nelie

Hi Gail,
Staph infections are nasty things. I had it once when I turned up allergic to my blood pressure medications. Took 3 weeks before I was back on my feet, most of which I was 'sick as a dog', running a 104 temperature, vomiting, etc. Hope it doesn't knock Barry out like it did me. It's a shame he had to come down with this after doing so well in treatment.

Glad he is now home and can eat well. Hope he has a speedy recovery.

Take care,
Eileen

Hi guys --

Next-to-last treatment today (no, tomo is *still* down --- guys worked until 3:30 am and still didn't solve the problem -- more Hi-Art engineers flying in, quite a circus. They are obviously terrified that they are pissing off an important customer, which they are, plus al the patients as well).

Then we met with RO and his resident, and they were very happy with things so far but of course it's that 2-month mark (when Hopkins looks at results -- they don't do it beforehand) that's important.

I went out tonight and brought little gifts for RO nurse and the two therapists, they have been great and very supportive. I think we have hooked one on bird-watching, he bought a book and now tells us every new species he sees. Our RO promises champagne in two months when Barry can drink it! He is positive we will have something to celebrate. I am keeping all fingers and toes crossed until then (makes it very hard to type and walk, I tell you...)

Supper was cream of shrimp soup -- mmmmm...

Gail