Sunday update

Brian didn't have such a good day today.

He was tired and a more then a little concerned about how he is emotionally feeling. I know this because he came into my office when I was working on tonight's lucy blog to ask me about what the pet scan said about his brain.
Seems he is concerned with the apathy he is currently feeling.

Might be something we want to follow up on as time passes....since he has suffered tremendous side effects in the past with Chemo Brain...this is sort of how it started before....but he is more expressive now, so it's good, but bad...and certainly does little to lighten our load.

saturday update

Brian is doing well, though my fibro is really bad right now. It's hard to go up the stairs and get in and out of the car...going to be cane time again.

This is probably a side flare from stress. But I will think about a dr.s visit soon.

Brian continues to do well and looks forward to some outside activities now that his platelet count is normal. (though his energy is likely to wain quickly).

It's fall here now in the poconos and the cold evening temps remind me we didn't get wood chopped for winter....damn....anyone have a cord sitting around all ready to go..

there are never enough hours in a day....

Thursday's update

Sorry for those of you waiting to hear how Brian's visit went. My drive to Philadelphia seriously aggravated my already flaring Fibromyalgia and I have been too tired and in too much pain to blog.

Brian's counts are terrific and his doctor is thrilled with his progress. He is off the antifungal and antiviral and is just on oral antibiotics m/w/f to prevent pneumonia. He only has to have labs done once week and we'll go back to Philadelphia in a month. He'll have the PET scans redone around day 100...so it's just sit and wait until then.
He's tired but good.

Stephanie got her job from Tueday's interview...she starts tomorrow...

Monday update

Brian is having a great day. He cooked himself some food...all protein, drank a 1/2 gallon of milk, ate an entire package of bacon, and I didn't even count how many eggs...loaded the dishwasher...rambled excitedly about a computer thing he's doing, watched the big "c" on HBO (which he though was very funny and didn't feel uncomfortable with at all?) played with the dogs for a few minutes then went upstairs to rest.
I am quite please...

Stephanie has another job interview tomorrow...she went to one on saturday too.

It's raining day3?...I think...good soaking rain, but that's enough now...

Wednesday is out trip to Philly. Brian's appointment is at 10am so we'll leave around 7am.

saturday update

Brian had a good day today. He's still frustrated by his energy level, but he simply isn't considering the facts that he's only been out of the hospital for a week.

He's a little bored I think, but a little too tired to really go and do anything yet. but all in all, I think he's doing really well.

He had a great time last night, he and Steph made the tacos and we all sat down to watch Harold and Kumar go to white castle...it was a great evening. I hope we have many more just like it.

Hey it's Friday....

Brian has been sleeping much better and really getting some much needed good rest now that he is tubeless.

He is excited because we are making taco's tonight for dinner....he loves tacos.

Stephanie and I are processing the herbs, I cut them yesterday and they are being dehydrated, powdered and containerized.

The chives are about to bloom, so I waited in clipping them. But the nights are getting cool now and I know the growing season is coming to an end and this week I have time to go the herbs.
Next Wednesday we head back to Philadelphia for the first post treatment check up. IF we start testing soon, that can be very time consuming, so go to do things while I have the time.

wednesday update

Today is Brian's last day of IV antibiotics and he is so happy. No more pole friend....tomorrow when the nurse comes to pull labs, his port can be deaccessed and for the first time in 7 weeks, he can sleep without tubes hanging from his chest. Tomorrow night will be a very good night indeed. I am not even going to wake him up on friday and I hope he sleeps through and gets some decent pain free, apparatus free sleep.
He is doing well, and while his energy level still annoys him being so low, I think he is pinker and has more energy even if he doesn't notice yet.

it's all good.

Monday's update

long day....the home nurse had problems getting blood from Brian's port, so he had to take it peripherally which is an issue because his veins are worn out and hard to get, but I did get blood return later tonight when I flushed his line and hung his iv ...so maybe it was a little fibrin sheath forming that was dislodged with the heparin flushing. hope so.

I was tired and took a nap and am totally off schedule now, which is a pain to correct.

Antibiotic iv will be done on thursday and he's looking a little more pink today so it's good.

just trying to get a lot of rest and heal up.

Sunday update

It's raining here, but based on how dry things were when I got home this week, it is welcome. We need a good soaking and we are getting that steady moderate rain that will provide that.

my herbs grew a great deal while I was gone and all will need a good clipping back when the rain stops.

Brian is very tired again today and is also tired of the iv antibiotics. I set them to run once every eight hours and they run for 2 hours each, so it's alot and I think is reminiscent of the hospital when I come in to set them up. (and wake him up)

labs get drawn again tomorrow and we'll see if he needs a transfusion Tuesday. I wouldn't be surprised. But then again, I wouldn't be surprised if he rebounded back either. He drank 2 gallons of milk in 3 days, so it looks like I'll have to head out for more of that too.

I picked up a bit of a skin infection on my face,and my arm I assume is from the hospital, and after unsuccessfully trying to treat it for a few days, I shaved off my eyebrows. And while it looks a bit peculiar, things are healing up much quicker now. Almost all gone, and I can pencil in until things grow back, though my eyebrows grow pretty quickly, so no concern on that front.

Brian hasn't been up to going for a walk yet, but hopefully when the weather is nice, he'll feel up to some time outside.

Friday Update

Brian is doing well. Lots of resting for now along with his 3 times daily antibiotic IV....

starting to go through all the mail, getting an idea of how bad things really are....

we really never discussed how bad the fallout was after Brian finished treatment last time (with others), but it was bad...looks like it is not as bad this time, but we unfortunately don't have the jobs/income we had then either, so it might be actually worse. But as to if we share that information, we haven't decided yet. But it will be requiring our full attention no doubt.

Oh, and I've started a new blog, this one will be about all sorts of things. One of the nurses at U of P commented on how interesting it always was to come into Brian's room, we were always discussion such intriguing things, so hang on for some lively posts. There is a link on the side

Wednesday update

Brian came home last night. As soon as we got home, we had to get the nursing home care in to get his iv stuff set up and unpack all his medical equipment.
my refrigerator is now full of IV bags.

Scott took a few days off from work and we're just going to try and get settled back into a routine with the medical things included.
I will probably take a few days off form blogging as well. Lots to get caught up on.

monday pm update

Rumor has it that Brian is going home tomorrow...his hickmann catheter was removed today, and we are just waiting on some lab results to determine if he's going to need iv antibiotics at home or if he can take oral ones.
He's driving me nuts, so I am going to stay at my hosts home tonight, I have stuff to pack up and it will give me a chance to say goodbye.
They are a lovely family and I feel like I have made long term new friends. Unusual for me, I know....
Brian is unhappy that everything didn't come together for him to go home today.

Treatment is ending, let the healing begin. It can take up to a year or longer for Brian's system to recover, and then we will have to consider redoing all his childhood vaccines. I guess to some extent, it means his risk for contracting things is both from his weakened immune system and his loss of vaccine immunity.
I know that good food, good rest and the love of a zillion little cat feet and dog tongues will go a long way.

Sunday Update

Brian had another good set of labs. So good in fact, we might have some most excellent news tomorrow....we'll have to see.

In the meantime, they have upped his vancomycin doses and he is feeling yucky. Too much antibiotics are giving him diarrhea and a little nausea. He's eating some yogurt to try and counter that.

saturday update

Well,
Brian's gotten a nice bounce to his blood counts and as a result, is feeling much better. I think this is likely to see the turning point we've been waiting for. It certainly has been similar in the past. I'd be very surprised now not to see his counts continue to climb rapidly and all the medical things resolving quickly.
it will be a while before his counts are normal, but let's hope they get up there enough for him to go home soon, the hospital is not the place to get the sleep and decent food that helps the mind and body heal.

Friday PM update

Brian had a good enough day. He's slept most of the day, ate a little dinner, and is resting watching TV tonight.
He's black and blue all over from the platelets being so low and having injections and poking and prodding, but it is all for good reason.
I'm hoping things go smoothly tonight with the antibiotics and tomorrow with his counts so I can leave and go do wash again. Sure do wish there was a w/d here to use, but I could use a good nights sleep in a bed as well, though I'd really like to go home to my own bed.

The source of the blood infection is Brian's hick line, which is of no surprise to me. they are problematic. I've insisted it is removed prior to discharge, as they sometimes send patients home with them. He's got a portacath if they need future access anyhow.
His counts are still so low they are giving him 4 antibiotics, antifungals, antivirals and a variety of other preventatives, so for now, we are still holding off on any visitors. He doesn't want anything delaying his escaping to go home.

Friday mid day update

Well,
today is off to a little better start after a bad night. Brian had another reaction to a new antibiotic last night that they are giving him because of the staph infection in his blood.

His counts have come up slightly, so there will be no transfusions today. But he's pumped full of benedryl and mainly sleeping today.

wound care came by to examine his ulcers and get a treatment plan going, but the real problem is that his counts are so low he just can't heal.

I am confident that once his system starts to bounce back, things will fall into place quickly.
For now he just needs to eat and rest as much as possible so his system can start to recover.

Thursday update

Today was not a good day for Brian. His counts are beyond low and he had an allergic reaction during his platelet transfusion that left him swollen, itchy and covered in hives.

His blood cultures also came back with some bacteria growth, so his antibiotic regime has been upped and more antibiotic added.
He also had to have another chest xray today to make sure he isn't developing pneumonia. I am afraid that his hopes of going home this week are dashed completely.

I did get the nutritionist to come in and while we can't get the quality of food improved upon., we did get the quantity of it increased. Sadly Brian does not appreciate the efforts on my part at least tonight. Tomorrow after he's had a little more to eat, perhaps. But he feels so poorly today that he spent the whole day just laying in bed watching tv and sleeping.

I am staying at the hospital instead of the host home until he no longer needs transfusions. With him reacting to them, he needs to be watched constantly.

wednesday pm update late update

Brian spiked a very high fever tonight up over 102...so blood cultures had to be done again and the doctor on call came in to examine him. They suspect the cause to be a combination of mucusitis and low counts, but they are concerned there might be an abscess that needs addressing. They are going to add another antibiotic in addition to the several he is already getting.

He is very uncomfortable and opted to take another pain pill which means he really is in pain, because Brian prides himself on being able to endure without assistance.
Much to my surprise he submitted to the rectal exam without much to do. Very unusual and indicative of how poorly he is feeling.

He will no doubt require transfusions again tomorrow based on the petechia that is spotting up all over his body tonight. I suspect his platelets are very low again.

wednesday pm update

Brian is in a lot of pain today from the esophageal ulcers and required some pain medication for the first time. Unfortunately pain medications make him a little irritable (or maybe just downright unpleasant) so today has been trying.
On the up side, we did get him an air mattress topper in which should help with his discomfort sleeping. Hopefully he will sleep better tonight between the pain meds and the mattress improvement.
Scott came down on his night off for a visit, but he too is tired, so basically I am stuck in a hospital room with two tired and cranky men....just how the hell do I get to be so damn lucky.

no transfusions today and the counts are up just a tiny little fraction..but it's in the right direction so I'll take it and be thrilled. The sooner the counts start to recover, the sooner we can get the flock out of here.
But THERE's TV..... :)

wednesday am update

Brian is smiling watching the history channel....it's his favorite channel and it's distracting him from what started out a very cranky morning.
To help with the lack of sleeping, they are getting him an eggcrate for his bed and I told the doctors this am that he needs more and better food, so they are sending nutrition up to see what they can do. I am hoping this is the turning point because the real healing isn't going to start until he gets home. and he can't get home until his counts go up.
They are a little higher this morning, but just a tiny bit. And he's still having fever periodically.

The TV still works and although I don't know why, or who, I am eternally grateful.

OMG the TV works

I turned the Tv on tonight because I couldn't stand it any more and I was willing to listen to Brian's ranting even over the headline new channel that was the only channel that worked besides family and the hospital channels and it WORKS!!!

I don't know if it is a glitch, or some super special secret blog reader arranged for the tv...but THANK YOU VERY MUCH....

my sanity is saved....hoping it stays working :)

Tuesday pm update

well...two pints of blood and a bag of platelets later, and Brian's whining about the crap food here again....

someone send me some good cheese will you??....I've plenty if whine to go with it.

Tuesday am update

Transfusions today....both platelets and red cells....I don't have the labs yet, but I know they must be really low...
Brian's not happy, he doesn't like transfusions and they are not always problem free for him. But let's hope so.

We were still alseep this morning when things got rolling and we got a snide comment about it....pretty funny since we barely have been sleeping. I let it go ....for now....just in case it was a flat attempt at humor. But they seriously don't want to go down that path with me.

I have really nothing bad to say about the care here. We've had good doctors and caring nurses so far. Sometimes a little too attentive. HOWEVER....if I have a complaint, it would be about the cleaning crew (contracted out of course) not exactly conscientious.

monday pm update

Extreme cranky....pacing like a caged tiger and irritable. That would be Brian.
things at home...SIGH...

Brian got his hick line flushed with TPA...it stopped working and he has a history of fibrin sheaths.

my evening?....let's just say more pleasant ones have been spent.....

pretty soon I might just check myself in for a 48 hour vacation in the psych ward....at least I wouldn't have to pay for the crappy food...

failing counts.....monday am update

And the counts keep failing....they are lowwwww today....almost at transfusion level, but he manages to just skirt...but they expect his counts to continue to fall through the week, so it doesn't look like we'll be getting out of here anytime soon unfortunately.

That was disappointing news, the constant drain on our resources is really taking it's toll and the longer I stay in the city that isn't going to change. But to leave Brian here by himself really isn't an acceptable option. It just all Sucks



Brian and I both want to go home....and things there aren't going particularly well either....we really work much better together then apart.

so his white cell count is 0.1
his red cell count is 2.8
his platelets are 22....

nice and low....

Sunday pm update

Tonight Brian has a little fever 100.4....you know..little in the world...big in chemo land...but nothing will change and he actually feels better though he has a sore in his esophagus that is really hurting him when he eats.
The gastrointestinal sores are the worst...they were before and they are again, causing pain and serious discomfort. He is getting medication for them to help them heal, but it really takes time.

Today is day 4 post transplant and all things considered, he's doing really well. He has expressed his desire that he doesn't want to go through this again and he hopes that cancer is gone. As I sit here and watch him, I suspect that if it is not, and it returns, getting him to accept treatment would be a battle. He has the most amazing spirit however, and for those few who really get to know, there is not a better soul on the planet.

sUNDAY

His Ice cream is HAPPY

even if he isn't....I swear it is exactly how it looked when he took the lid off....

Crankenstein....the sequel

Uh hun....all he needs are some neck bolts...Deb?...Photoshop time....

hey Dude, you've got a medicine cup mohawk....COOL...Rad?....whatever....

Sunday Update

Brian feels better and his temperature is down. He is still on IV antibiotics, but is feeling more like his disgruntled self.
He starts neupogen injections tonight, so that should help boost that 0.2 white cell count. His red cells are hanging in there, but his platelets fell to 44 today. Another plunge and he'll need a transfusion. We'll see in the am.
His wash is done, my errands are done and the hospital internet works...all is right in the world...

oh, my 13 MONTH OLD washer at home is apparently broken though, and Stephanie the notorious vacuum cleaner killer, knows nothing about it.... yep, I believe that.....Not....